Search

Your search keyword '"Benham H"' showing total 110 results
Start Over Author "Benham H"
110 results on '"Benham H"'

1. Dynamics of Patient-Based Benefit-Risk Assessment of Medicines in Chronic Diseases: A Systematic Review

Author

EL Masri H, McGuire TM, van Driel ML, Benham H, and Hollingworth SA

Subjects
patient preference/ choice behavior/ decision making/ health knowledge, attitudes, practice/ attributes/ risk tolerance, Medicine (General), R5-920
Abstract

Hiba EL Masri,1 Treasure M McGuire,1– 3 Mieke L van Driel,4 Helen Benham,5,6 Samantha A Hollingworth1 1School of Pharmacy, The University of Queensland, Brisbane, Queensland, Australia; 2Faculty of Health Sciences and Medicine, Bond University, Robina, Queensland, Australia; 3Mater Pharmacy, Mater Health, Brisbane, Queensland, Australia; 4Primary Care Clinical Unit, Faculty of Medicine, The University of Queensland, Brisbane, Australia; 5Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia; 6Department of Rheumatology, Princess Alexandra Hospital, Brisbane, Queensland, AustraliaCorrespondence: Hiba EL Masri, School of Pharmacy, The University of Queensland, 20 Cornwall St, Woolloongabba, Brisbane, Queensland, 4102, Australia, Tel +61 478512234, Email h.elmasri@uqconnect.edu.auBackground: A critical gap exits in understanding the dynamics of patient-based benefit-risk assessment (BRA) of medicines in chronic diseases during the disease journey.Purpose: To systematically review and synthesize current evidence on the changes of patients’ preferences about the benefits and risks of medicines during their disease journey including the influence of disease duration and severity, and previous treatment experience.Methods: A systematic review of studies identified in PubMed and Embase, from inception to November 2020, was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. Articles were eligible if they analyzed adult patient-based BRA of medicines with a chronic disease, based on at least one of the pre-specified dimensions: disease severity, disease duration, or previous treatment experience.Results: A total of 26,228 articles were identified and 105 were eligible for inclusion. Of these, 85 detected a variation in patient-based BRA of medicines with at least one of the pre-specified criteria. Patients with higher disease severity and more treatment experience have increased risk tolerance. It remains inconclusive whether disease duration directly affects the relative importance of a patient’s preference.Conclusion: Factors important for patients’ BRA of their medicines during a chronic disease journey vary more with their clinical situation and previous treatment experience than with time since diagnosis. Due to the importance of these factors on patients’ perspectives and potential impact on their decision-making and eventually their clinical outcomes, there is a need for more studies to assess the dynamics of patients’ BRA in every disease.Keywords: patient preference, choice behavior, decision making, health knowledge, attitudes, practice, attributes, risk tolerance

Published
2022

2. Capturing the Range of Disease Involvement in Localized Scleroderma: The Localized Scleroderma Total Severity Scale

Author

Li, Suzanne C., Rabinovich, C. Egla, Becker, Mara L., Torok, Kathryn S., Ferguson, Polly J., Dedeoglu, Fatma, Hong, Sandy, Sivaraman, Vidya, Laxer, Ronald M., Stewart, Katie, Ibarra, Maria F., Mason, Thomas, II, Higgins, Gloria, Pope, Elena, Li, Xiaohu, Lozy, Tara, Fuhlbrigge, Robert C., Anderson, E., Benham, H., Feldman, B., Francis, K., Goh, I., Jaquith, J., SchollaertFitch, K., Smith, C., Weiss, J., and Wooton, J.

Published
2024
Full Text
View/download PDF

3. Health Equity Implications of Missing Data Among Youths With Childhood‐Onset Systemic Lupus Erythematosus: A Proof‐of‐Concept Study in the Childhood Arthritis and Rheumatology Research Alliance Registry

Author

Woo, Jennifer M. P., Simmonds, Faith, Dennos, Anne, Son, Mary Beth F., Lewandowski, Laura B., Rubinstein, Tamar B., Abel, N., Abulaban, K., Adams, A., Adams, M., Agbayani, R., Aiello, J., Akoghlanian, S., Alejandro, C., Allenspach, E., Alperin, R., Alpizar, M., Amarilyo, G., Ambler, W., Anderson, E., Ardoin, S., Armendariz, S., Baker, E., Balboni, I., Balevic, S., Ballenger, L., Ballinger, S., Balmuri, N., Barbar‐Smiley, F., Barillas‐Arias, L., Basiaga, M., Baszis, K., Becker, M., Bell‐Brunson, H., Beltz, E., Benham, H., Benseler, S., Bernal, W., Beukelman, T., Bigley, T., Binstadt, B., Black, C., Blakley, M., Bohnsack, J., Boland, J., Boneparth, A., Bowman, S., Bracaglia, C., Brooks, E., Brothers, M., Brown, A., Brunner, H., Buckley, M., Buckley, M., Bukulmez, H., Bullock, D., Cameron, B., Canna, S., Cannon, L., Carper, P., Cartwright, V., Cassidy, E., Cerracchio, L., Chalom, E., Chang, J., Chang‐Hoftman, A., Chauhan, V., Chira, P., Chinn, T., Chundru, K., Clairman, H., Co, D., Confair, A., Conlon, H., Connor, R., Cooper, A., Cooper, J., Cooper, S., Correll, C., Corvalan, R., Costanzo, D., Cron, R., Curiel‐Duran, L., Curington, T., Curry, M., Dalrymple, A., Davis, A., Davis, C., Davis, C., Davis, T., De Benedetti, F., De Ranieri, D., Dean, J., Dedeoglu, F., DeGuzman, M., Delnay, N., Dempsey, V., DeSantis, E., Dickson, T., Dingle, J., Donaldson, B., Dorsey, E., Dover, S., Dowling, J., Drew, J., Driest, K., Du, Q., Duarte, K., Durkee, D., Duverger, E., Dvergsten, J., Eberhard, A., Eckert, M., Ede, K., Edelheit, B., Edens, C., Edens, C., Edgerly, Y., Elder, M., Ervin, B., Fadrhonc, S., Failing, C., Fair, D., Falcon, M., Favier, L., Federici, S., Feldman, B., Fennell, J., Ferguson, I., Ferguson, P., Ferreira, B., Ferrucho, R., Fields, K., Finkel, T., Fitzgerald, M., Fleming, C., Flynn, O., Fogel, L., Fox, E., Fox, M., Franco, L., Freeman, M., Fritz, K., Froese, S., Fuhlbrigge, R., Fuller, J., George, N., Gerhold, K., Gerstbacher, D., Gilbert, M., Gillispie‐Taylor, M., Giverc, E., Godiwala, C., Goh, I., Goheer, H., Goldsmith, D., Gotschlich, E., Gotte, A., Gottlieb, B., Gracia, C., Graham, T., Grevich, S., Griffin, T., Griswold, J., Grom, A., Guevara, M., Guittar, P., Guzman, M., Hager, M., Hahn, T., Halyabar, O., Hammelev, E., Hance, M., Hanson, A., Harel, L., Haro, S., Harris, J., Harry, O., Hartigan, E., Hausmann, J., Hay, A., Hayward, K., Heiart, J., Hekl, K., Henderson, L., Henrickson, M., Hersh, A., Hickey, K., Hill, P., Hillyer, S., Hiraki, L., Hiskey, M., Hobday, P., Hoffart, C., Holland, M., Hollander, M., Hong, S., Horwitz, M., Hsu, J., Huber, A., Huggins, J., Hui‐Yuen, J., Hung, C., Huntington, J., Huttenlocher, A., Ibarra, M., Imundo, L., Inman, C., Insalaco, A., Jackson, A., Jackson, S., James, K., Janow, G., Jaquith, J., Jared, S., Johnson, N., Jones, J., Jones, J., Jones, J., Jones, K., Jones, S., Joshi, S., Jung, L., Justice, C., Justiniano, A., Karan, N., Kaufman, K., Kemp, A., Kessler, E., Khalsa, U., Kienzle, B., Kim, S., Kimura, Y., Kingsbury, D., Kitcharoensakkul, M., Klausmeier, T., Klein, K., Klein‐Gitelman, M., Kompelien, B., Kosikowski, A., Kovalick, L., Kracker, J., Kramer, S., Kremer, C., Lai, J., Lam, J., Lang, B., Lapidus, S., Lapin, B., Lasky, A., Latham, D., Lawson, E., Laxer, R., Lee, P., Lee, P., Lee, T., Lentini, L., Lerman, M., Levy, D., Li, S., Lieberman, S., Lim, L., Lin, C., Ling, N., Lingis, M., Lo, M., Lovell, D., Lowman, D., Luca, N., Lvovich, S., Madison, C., Madison, J., Manzoni, S. Magni, Malla, B., Maller, J., Malloy, M., Mannion, M., Manos, C., Marques, L., Martyniuk, A., Mason, T., Mathus, S., McAllister, L., McCarthy, K., McConnell, K., McCormick, E., McCurdy, D., Stokes, P. McCurdy, McGuire, S., McHale, I., McMonagle, A., McMullen‐Jackson, C., Meidan, E., Mellins, E., Mendoza, E., Mercado, R., Merritt, A., Michalowski, L., Miettunen, P., Miller, M., Milojevic, D., Mirizio, E., Misajon, E., Mitchell, M., Modica, R., Mohan, S., Moore, K., Moorthy, L., Morgan, S., Dewitt, E. Morgan, Moss, C., Moussa, T., Mruk, V., Murphy, A., Muscal, E., Nadler, R., Nahal, B., Nanda, K., Nasah, N., Nassi, L., Nativ, S., Natter, M., Neely, J., Nelson, B., Newhall, L., Ng, L., Nicholas, J., Nicolai, R., Nigrovic, P., Nocton, J., Nolan, B., Oberle, E., Obispo, B., OʼBrien, B., OʼBrien, T., Okeke, O., Oliver, M., Olson, J., OʼNeil, K., Onel, K., Orandi, A., Orlando, M., Osei‐Onomah, S., Oz, R., Pagano, E., Paller, A., Pan, N., Panupattanapong, S., Pardeo, M., Paredes, J., Parsons, A., Patel, J., Pentakota, K., Pepmueller, P., Pfeiffer, T., Phillippi, K., Phillippi, K., Marafon, D. Pires, Ponder, L., Pooni, R., Prahalad, S., Pratt, S., Protopapas, S., Puplava, B., Quach, J., Quinlan‐Waters, M., Rabinovich, C., Radhakrishna, S., Rafko, J., Raisian, J., Rakestraw, A., Ramirez, C., Ramsay, E., Ramsey, S., Randell, R., Reed, A., Reed, A., Reed, A., Reid, H., Remmel, K., Repp, A., Reyes, A., Richmond, A., Riebschleger, M., Ringold, S., Riordan, M., Riskalla, M., Ritter, M., Rivas‐Chacon, R., Robinson, A., Rodela, E., Rodriquez, M., Rojas, K., Ronis, T., Rosenkranz, M., Rosolowski, B., Rothermel, H., Rothman, D., Roth‐Wojcicki, E., Rouster‐Stevens, K., Rubinstein, T., Ruth, N., Saad, N., Sabbagh, S., Sacco, E., Sadun, R., Sandborg, C., Sanni, A., Santiago, L., Sarkissian, A., Savani, S., Scalzi, L., Schanberg, L., Scharnhorst, S., Schikler, K., Schlefman, A., Schmeling, H., Schmidt, K., Schmitt, E., Schneider, R., Schollaert‐Fitch, K., Schulert, G., Seay, T., Seper, C., Shalen, J., Sheets, R., Shelly, A., Shenoi, S., Shergill, K., Shirley, J., Shishov, M., Shivers, C., Silverman, E., Singer, N., Sivaraman, V., Sletten, J., Smith, A., Smith, C., Smith, J., Smith, J., Smitherman, E., Soep, J., Son, M., Spence, S., Spiegel, L., Spitznagle, J., Sran, R., Srinivasalu, H., Stapp, H., Steigerwald, K., Rakovchik, Y. Sterba, Stern, S., Stevens, A., Stevens, B., Stevenson, R., Stewart, K., Stingl, C., Stokes, J., Stoll, M., Stringer, E., Sule, S., Sumner, J., Sundel, R., Sutter, M., Syed, R., Syverson, G., Szymanski, A., Taber, S., Tal, R., Tambralli, A., Taneja, A., Tanner, T., Tapani, S., Tarshish, G., Tarvin, S., Tate, L., Taxter, A., Taylor, J., Terry, M., Tesher, M., Thatayatikom, A., Thomas, B., Tiffany, K., Ting, T., Tipp, A., Toib, D., Torok, K., Toruner, C., Tory, H., Toth, M., Tse, S., Tubwell, V., Twilt, M., Uriguen, S., Valcarcel, T., Van Mater, H., Vannoy, L., Varghese, C., Vasquez, N., Vazzana, K., Vehe, R., Veiga, K., Velez, J., Verbsky, J., Vilar, G., Volpe, N., von Scheven, E., Vora, S., Wagner, J., Wagner‐Weiner, L., Wahezi, D., Waite, H., Walker, J., Walters, H., Muskardin, T. Wampler, Waqar, L., Waterfield, M., Watson, M., Watts, A., Weiser, P., Weiss, J., Weiss, P., Wershba, E., White, A., Williams, C., Wise, A., Woo, J., Woolnough, L., Wright, T., Wu, E., Yalcindag, A., Yee, M., Yen, E., Yeung, R., Yomogida, K., Yu, Q., Zapata, R., Zartoshti, A., Zeft, A., Zeft, R., Zhang, Y., Zhao, Y., Zhu, A., and Zic, C.

Published
2023
Full Text
View/download PDF

4. Childhood‐Onset Lupus Nephritis in the Childhood Arthritis and Rheumatology Research Alliance Registry: Short‐Term Kidney Status and Variation in Care

Author

Smitherman, Emily A., Chahine, Rouba A., Beukelman, Timothy, Lewandowski, Laura B., Rahman, A. K. M. Fazlur, Wenderfer, Scott E., Curtis, Jeffrey R., Hersh, Aimee O., Abel, N., Abulaban, K., Adams, A., Adams, M., Agbayani, R., Aiello, J., Akoghlanian, S., Alejandro, C., Allenspach, E., Alperin, R., Alpizar, M., Amarilyo, G., Ambler, W., Anderson, E., Ardoin, S., Armendariz, S., Baker, E., Balboni, I., Balevic, S., Ballenger, L., Ballinger, S., Balmuri, N., Barbar‐Smiley, F., Barillas‐Arias, L., Basiaga, M., Baszis, K., Becker, M., Bell‐Brunson, H., Beltz, E., Benham, H., Benseler, S., Bernal, W., Beukelman, T., Bigley, T., Binstadt, B., Black, C., Blakley, M., Bohnsack, J., Boland, J., Boneparth, A., Bowman, S., Bracaglia, C., Brooks, E., Brothers, M., Brown, A., Brunner, H., Buckley, M., Buckley, M., Bukulmez, H., Bullock, D., Cameron, B., Canna, S., Cannon, L., Carper, P., Cartwright, V., Cassidy, E., Cerracchio, L., Chalom, E., Chang, J., Chang‐Hoftman, A., Chauhan, V., Chira, P., Chinn, T., Chundru, K., Clairman, H., Co, D., Confair, A., Conlon, H., Connor, R., Cooper, A., Cooper, J., Cooper, S., Correll, C., Corvalan, R., Costanzo, D., Cron, R., Curiel‐Duran, L., Curington, T., Curry, M., Dalrymple, A., Davis, A., Davis, C., Davis, C., Davis, T., De Benedetti, F., De Ranieri, D., Dean, J., Dedeoglu, F., DeGuzman, M., Delnay, N., Dempsey, V., DeSantis, E., Dickson, T., Dingle, J., Donaldson, B., Dorsey, E., Dover, S., Dowling, J., Drew, J., Driest, K., Du, Q., Duarte, K., Durkee, D., Duverger, E., Dvergsten, J., Eberhard, A., Eckert, M., Ede, K., Edelheit, B., Edens, C., Edens, C., Edgerly, Y., Elder, M., Ervin, B., Fadrhonc, S., Failing, C., Fair, D., Falcon, M., Favier, L., Federici, S., Feldman, B., Fennell, J., Ferguson, I., Ferguson, P., Ferreira, B., Ferrucho, R., Fields, K., Finkel, T., Fitzgerald, M., Fleming, C., Flynn, O., Fogel, L., Fox, E., Fox, M., Franco, L., Freeman, M., Fritz, K., Froese, S., Fuhlbrigge, R., Fuller, J., George, N., Gerhold, K., Gerstbacher, D., Gilbert, M., Gillispie‐Taylor, M., Giverc, E., Godiwala, C., Goh, I., Goheer, H., Goldsmith, D., Gotschlich, E., Gotte, A., Gottlieb, B., Gracia, C., Graham, T., Grevich, S., Griffin, T., Griswold, J., Grom, A., Guevara, M., Guittar, P., Guzman, M., Hager, M., Hahn, T., Halyabar, O., Hammelev, E., Hance, M., Hanson, A., Harel, L., Haro, S., Harris, J., Harry, O., Hartigan, E., Hausmann, J., Hay, A., Hayward, K., Heiart, J., Hekl, K., Henderson, L., Henrickson, M., Hersh, A., Hickey, K., Hill, P., Hillyer, S., Hiraki, L., Hiskey, M., Hobday, P., Hoffart, C., Holland, M., Hollander, M., Hong, S., Horwitz, M., Hsu, J., Huber, A., Huggins, J., Hui‐Yuen, J., Hung, C., Huntington, J., Huttenlocher, A., Ibarra, M., Imundo, L., Inman, C., Insalaco, A., Jackson, A., Jackson, S., James, K., Janow, G., Jaquith, J., Jared, S., Johnson, N., Jones, J., Jones, J., Jones, J., Jones, K., Jones, S., Joshi, S., Jung, L., Justice, C., Justiniano, A., Karan, N., Kaufman, K., Kemp, A., Kessler, E., Khalsa, U., Kienzle, B., Kim, S., Kimura, Y., Kingsbury, D., Kitcharoensakkul, M., Klausmeier, T., Klein, K., Klein‐Gitelman, M., Kompelien, B., Kosikowski, A., Kovalick, L., Kracker, J., Kramer, S., Kremer, C., Lai, J., Lam, J., Lang, B., Lapidus, S., Lapin, B., Lasky, A., Latham, D., Lawson, E., Laxer, R., Lee, P., Lee, P., Lee, T., Lentini, L., Lerman, M., Levy, D., Li, S., Lieberman, S., Lim, L., Lin, C., Ling, N., Lingis, M., Lo, M., Lovell, D., Lowman, D., Luca, N., Lvovich, S., Madison, C., Madison, J., Manzoni, S. Magni, Malla, B., Maller, J., Malloy, M., Mannion, M., Manos, C., Marques, L., Martyniuk, A., Mason, T., Mathus, S., McAllister, L., McCarthy, K., McConnell, K., McCormick, E., McCurdy, D., Stokes, P. McCurdy, McGuire, S., McHale, I., McMonagle, A., McMullen‐Jackson, C., Meidan, E., Mellins, E., Mendoza, E., Mercado, R., Merritt, A., Michalowski, L., Miettunen, P., Miller, M., Milojevic, D., Mirizio, E., Misajon, E., Mitchell, M., Modica, R., Mohan, S., Moore, K., Moorthy, L., Morgan, S., Dewitt, E. Morgan, Moss, C., Moussa, T., Mruk, V., Murphy, A., Muscal, E., Nadler, R., Nahal, B., Nanda, K., Nasah, N., Nassi, L., Nativ, S., Natter, M., Neely, J., Nelson, B., Newhall, L., Ng, L., Nicholas, J., Nicolai, R., Nigrovic, P., Nocton, J., Nolan, B., Oberle, E., Obispo, B., OʼBrien, B., OʼBrien, T., Okeke, O., Oliver, M., Olson, J., OʼNeil, K., Onel, K., Orandi, A., Orlando, M., Osei‐Onomah, S., Oz, R., Pagano, E., Paller, A., Pan, N., Panupattanapong, S., Pardeo, M., Paredes, J., Parsons, A., Patel, J., Pentakota, K., Pepmueller, P., Pfeiffer, T., Phillippi, K., Marafon, D. Pires, Phillippi, K., Ponder, L., Pooni, R., Prahalad, S., Pratt, S., Protopapas, S., Puplava, B., Quach, J., Quinlan‐Waters, M., Rabinovich, C., Radhakrishna, S., Rafko, J., Raisian, J., Rakestraw, A., Ramirez, C., Ramsay, E., Ramsey, S., Randell, R., Reed, A., Reed, A., Reed, A., Reid, H., Remmel, K., Repp, A., Reyes, A., Richmond, A., Riebschleger, M., Ringold, S., Riordan, M., Riskalla, M., Ritter, M., Rivas‐Chacon, R., Robinson, A., Rodela, E., Rodriquez, M., Rojas, K., Ronis, T., Rosenkranz, M., Rosolowski, B., Rothermel, H., Rothman, D., Roth‐Wojcicki, E., Rouster – Stevens, K., Rubinstein, T., Ruth, N., Saad, N., Sabbagh, S., Sacco, E., Sadun, R., Sandborg, C., Sanni, A., Santiago, L., Sarkissian, A., Savani, S., Scalzi, L., Schanberg, L., Scharnhorst, S., Schikler, K., Schlefman, A., Schmeling, H., Schmidt, K., Schmitt, E., Schneider, R., Schollaert‐Fitch, K., Schulert, G., Seay, T., Seper, C., Shalen, J., Sheets, R., Shelly, A., Shenoi, S., Shergill, K., Shirley, J., Shishov, M., Shivers, C., Silverman, E., Singer, N., Sivaraman, V., Sletten, J., Smith, A., Smith, C., Smith, J., Smith, J., Smitherman, E., Soep, J., Son, M., Spence, S., Spiegel, L., Spitznagle, J., Sran, R., Srinivasalu, H., Stapp, H., Steigerwald, K., Rakovchik, Y. Sterba, Stern, S., Stevens, A., Stevens, B., Stevenson, R., Stewart, K., Stingl, C., Stokes, J., Stoll, M., Stringer, E., Sule, S., Sumner, J., Sundel, R., Sutter, M., Syed, R., Syverson, G., Szymanski, A., Taber, S., Tal, R., Tambralli, A., Taneja, A., Tanner, T., Tapani, S., Tarshish, G., Tarvin, S., Tate, L., Taxter, A., Taylor, J., Terry, M., Tesher, M., Thatayatikom, A., Thomas, B., Tiffany, K., Ting, T., Tipp, A., Toib, D., Torok, K., Toruner, C., Tory, H., Toth, M., Tse, S., Tubwell, V., Twilt, M., Uriguen, S., Valcarcel, T., Van Mater, H., Vannoy, L., Varghese, C., Vasquez, N., Vazzana, K., Vehe, R., Veiga, K., Velez, J., Verbsky, J., Vilar, G., Volpe, N., von Scheven, E., Vora, S., Wagner, J., Wagner‐Weiner, L., Wahezi, D., Waite, H., Walker, J., Walters, H., Muskardin, T. Wampler, Waqar, L., Waterfield, M., Watson, M., Watts, A., Weiser, P., Weiss, J., Weiss, P., Wershba, E., White, A., Williams, C., Wise, A., Woo, J., Woolnough, L., Wright, T., Wu, E., Yalcindag, A., Yee, M., Yen, E., Yeung, R., Yomogida, K., Yu, Q., Zapata, R., Zartoshti, A., Zeft, A., Zeft, R., Zhang, Y., Zhao, Y., Zhu, A., and Zic, C.

Published
2023
Full Text
View/download PDF

5. Down Syndrome–Associated Arthritis Cohort in the New Childhood Arthritis and Rheumatology Research Alliance Registry: Clinical Characteristics, Treatment, and Outcomes

Author

Jones, Jordan T., Smith, Chelsey, Becker, Mara L., Lovell, Daniel, Abel, N., Abulaban, K., Adams, A., Adams, M., Agbayani, R., Akoghlanian, S., Al Ahmed, O., Allenspach, E., Alperin, R., Alpizar, M., Amarilyo, G., Anastasopoulos, D., Anderson, E., Andrew, M., Ardalan, K., Ardoin, S., Baker, E., Balboni, I., Balevic, S., Ballenger, L., Ballinger, S., Balmuri, N., Barbar‐Smiley, F., Barillas‐Arias, L., Basiaga, M., Baszis, K., Bell‐Brunson, H., Beltz, E., Benham, H., Benseler, S., Bernal, W., Beukelman, T., Bigley, T., Binstadt, B., Birmingham, J., Black, C., Blakley, M., Bohnsack, J., Boland, J., Boneparth, A., Bowman, S., Brooks, E., Brown, A., Brunner, H., Buckley, M., Buckley, M., Bukulmez, H., Bullington, A., Bullock, D., Cameron, B., Canna, S., Cannon, L., Carpenter, S., Carper, P., Cartwright, V., Cassidy, E., Cerracchio, L., Chalom, E., Chang, J., Chang‐Hoftman, A., Chauhan, V., Chira, P., Chiu, Y., Chundru, K., Clairman, H., Co, D., Collins, K., Confair, A., Conlon, H., Connor, R., Cooper, A., Cooper, J., Cooper, S., Correll, C., Corvalan, R., Cospito, T., Costanzo, D., Cron, R., Curry, M., Dalrymple, A., Davis, A., Davis, C., Davis, C., Davis, T., De Ranieri, D., Dean, J., Dedeoglu, F., DeGuzman, M., Delnay, N., Dempsey, V., DeSantis, E., Dickson, T., Dingle, J., Dionizovik‐Dimanovski, M., Donaldson, B., Dorsey, E., Dover, S., Dowling, J., Drew, J., Driest, K., Drummond, K., Du, Q., Duarte, K., Durkee, D., Duverger, E., Dvergsten, J., Eberhard, A., Eckert, M., Ede, K., Edens, C., Edens, C., Edgerly, Y., Elder, M., Fadrhonc, S., Failing, C., Fair, D., Falcon, M., Favier, L., Feldman, B., Ferguson, I., Ferguson, P., Ferreira, B., Ferrucho, R., Fields, K., Finkel, T., Fitzgerald, M., Fleck, D., Fleming, C., Flynn, O., Fogel, L., Fox, E., Fox, M., Franco, L., Freeman, M., Froese, S., Fuhlbrigge, R., Fuller, J., George, N., Gergely, T., Gerhold, K., Gerstbacher, D., Gilbert, M., Gillispie‐Taylor, M., Giverc, E., Goh, I., Goldberg, T., Goldsmith, D., Gotschlich, E., Gotte, A., Gottlieb, B., Gracia, C., Graham, T., Grevich, S., Griffin, T., Griswold, J., Guevara, M., Guittar, P., Gurion, R., Guzman, M., Hahn, T., Halyabar, O., Hammelev, E., Hance, M., Hansman, E., Hanson, A., Harel, L., Haro, S., Harris, J., Hartigan, E., Hausmann, J., Hay, A., Hayward, K., Heiart, J., Hekl, K., Henderson, L., Henrickson, M., Hersh, A., Hickey, K., Hillyer, S., Hiraki, L., Hiskey, M., Hobday, P., Hoffart, C., Holland, M., Hollander, M., Hong, S., Horwitz, M., Hsu, J., Huber, A., Huggins, J., Hughes, R., Hui‐Yuen, J., Hung, C., Huntington, J., Huttenlocher, A., Ibarra, M., Imundo, L., Inman, C., Iqbal, S., Jackson, A., Jackson, S., James, K., Janow, G., Jaquith, J., Jared, S., Johnson, N., Jones, J., Jones, J., Jones, J., Jones, K., Jones, S., Joshi, S., Jung, L., Justice, C., Justiniano, A., Kahn, P., Karan, N., Kaufman, K., Kemp, A., Kessler, E., Khaleel, M., Khalsa, U., Kienzle, B., Kim, S., Kimura, Y., Kingsbury, D., Kitcharoensakkul, M., Klausmeier, T., Klein, K., Klein‐Gitelman, M., Kosikowski, A., Kovalick, L., Kracker, J., Kramer, S., Kremer, C., Lai, J., Lang, B., Lapidus, S., Lasky, A., Latham, D., Lawson, E., Laxer, R., Lee, P., Lee, P., Lee, T., Lentini, L., Lerman, M., Levy, D., Li, S., Lieberman, S., Lim, L., Lin, C., Ling, N., Lingis, M., Lo, M., Lovell, D., Luca, N., Lvovich, S., Ma, M., Mackey, C., Madison, C., Madison, J., Malla, B., Maller, J., Malloy, M., Mannion, M., Manos, C., Marques, L., Martyniuk, A., Mason, T., Mathus, S., McAllister, L., McCallum, B., McCarthy, K., McConnell, K., McCurdy, D., McCurdy Stokes, P., McGuire, S., McHale, I., McHugh, A., McKibben, K., McMonagle, A., McMullen‐Jackson, C., Meidan, E., Mellins, E., Mendoza, E., Mercado, R., Merritt, A., Michalowski, L., Miettunen, P., Miller, M., Mirizio, E., Misajon, E., Mitchell, M., Modica, R., Mohan, S., Moore, K., Moorthy, L., Morgan, S., Morgan Dewitt, E., Morris, S., Moss, C., Moussa, T., Mruk, V., Mulvhihill, E., Muscal, E., Nahal, B., Nanda, K., Nassi, L., Nativ, S., Natter, M., Neely, J., Nelson, B., Newhall, L., Ng, L., Nguyen, E., Nicholas, J., Nigrovic, P., Nocton, J., Oberle, E., Obispo, B., O’Brien, B., O’Brien, T., O’Connor, M., Oliver, M., Olson, J., O’Neil, K., Onel, K., Orlando, M., Oz, R., Pagano, E., Paller, A., Pan, N., Panupattanapong, S., Paredes, J., Parsons, A., Patel, J., Pentakota, K., Pepmueller, P., Pfeiffer, T., Phillippi, K., Phillippi, K., Ponder, L., Pooni, R., Prahalad, S., Pratt, S., Protopapas, S., Punaro, M., Puplava, B., Quach, J., Quinlan‐Waters, M., Quintero, A., Rabinovich, C., Radhakrishna, S., Rafko, J., Raisian, J., Rakestraw, A., Ramsay, E., Ramsey, S., Reed, A., Reed, A., Reed, A., Reid, H., Reyes, A., Richmond, A., Riebschleger, M., Ringold, S., Riordan, M., Riskalla, M., Ritter, M., Rivas‐Chacon, R., Roberson, S., Robinson, A., Rodela, E., Rodriquez, M., Rojas, K., Ronis, T., Rosenkranz, M., Rosenwasser Raines, N., Rosolowski, B., Rothermel, H., Rothman, D., Roth‐Wojcicki, E., Rouster–Stevens, K., Rubinstein, T., Ruth, N., Saad, N., Sabatino, M., Sabbagh, S., Sadun, R., Sandborg, C., Sanni, A., Sarkissian, A., Savani, S., Scalzi, L., Schanberg, L., Scharnhorst, S., Schikler, K., Schmeling, H., Schmidt, K., Schmitt, E., Schneider, R., Schollaert‐Fitch, K., Schulert, G., Seay, T., Seper, C., Shalen, J., Sheets, R., Shelly, A., Shen, B., Shenoi, S., Shergill, K., Shiff, N., Shirley, J., Shishov, M., Silverman, E., Singer, N., Sivaraman, V., Sletten, J., Smith, A., Smith, C., Smith, J., Smith, J., Smitherman, E., Snider, C., Soep, J., Son, M., Soybilgic, A., Spence, S., Spiegel, L., Spitznagle, J., Sran, R., Srinivasalu, H., Stapp, H., Stasek, J., Steigerwald, K., Sterba Rakovchik, Y., Stern, S., Stevens, A., Stevens, B., Stevenson, R., Stewart, K., Stingl, C., Stokes, J., Stoll, M., Stoops, S., Strelow, J., Stringer, E., Sule, S., Sumner, J., Sundel, R., Sura, A., Sutter, M., Syed, R., Taber, S., Tal, R., Tambralli, A., Taneja, A., Tanner, T., Tapani, S., Tarshish, G., Tarvin, S., Tate, L., Taxter, A., Taylor, J., Terry, M., Tesher, M., Thatayatikom, A., Thomas, B., Ting, T., Tipp, A., Toib, D., Torok, K., Toruner, C., Tory, H., Toth, M., Treemarcki, E., Tse, S., Tubwell, V., Twilt, M., Uriguen, S., Valcarcel, T., Van Mater, H., Vannoy, L., Varghese, C., Vasquez, N., Vazzana, K., Vega‐Fernandes, P., Vehe, R., Veiga, K., Velez, J., Verbsky, J., Volpe, N., von Scheven, E., Vora, S., Wagner, J., Wagner‐Weiner, L., Wahezi, D., Waite, H., Walker, J., Walters, H., Wampler Muskardin, T., Wang, C., Waqar, L., Waterfield, M., Watson, M., Watts, A., Waugaman, B., Weiser, P., Weiss, J., Weiss, P., Wershba, E., White, A., Williams, C., Wise, A., Woo, J., Woolnough, L., Wright, T., Wu, E., Yalcindag, A., Yee, M., Yen, E., Yeung, R., Yomogida, K., Yu, Q., Zapata, R., Zartoshti, A., Zeft, A., Zeft, R., Zemel, L., Zhang, Y., Zhao, Y., Zhu, A., and Zic, C.

Published
2021
Full Text
View/download PDF

6. Juvenile Spondyloarthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry: High Biologic Use, Low Prevalence of HLA–B27, and Equal Sex Representation in Sacroiliitis

Author

Rumsey, Dax G., Lougee, Aimee, Matsouaka, Roland, Collier, David H., Schanberg, Laura E., Schenfeld, Jennifer, Shiff, Natalie J., Stoll, Matthew L., Stryker, Scott, Weiss, Pamela F., Beukelman, Timothy, Abel, N., Abulaban, K., Adams, A., Adams, M., Agbayani, R., Aiello, J., Akoghlanian, S., Alejandro, C., Allenspach, E., Alperin, R., Alpizar, M., Amarilyo, G., Ambler, W., Anderson, E., Ardoin, S., Armendariz, S., Baker, E., Balboni, I., Balevic, S., Ballenger, L., Ballinger, S., Balmuri, N., Barbar‐Smiley, F., Barillas‐Arias, L., Basiaga, M., Baszis, K., Becker, M., Bell‐Brunson, H., Beltz, E., Benham, H., Benseler, S., Bernal, W., Bigley, T., Binstadt, B., Black, C., Blakley, M., Bohnsack, J., Boland, J., Boneparth, A., Bowman, S., Bracaglia, C., Brooks, E., Brothers, M., Brown, A., Brunner, H., Buckley, M., Buckley, M., Bukulmez, H., Bullock, D., Cameron, B., Canna, S., Cannon, L., Carper, P., Cartwright, V., Cassidy, E., Cerracchio, L., Chalom, E., Chang, J., Chang‐Hoftman, A., Chauhan, V., Chira, P., Chinn, T., Chundru, K., Clairman, H., Co, D., Confair, A., Conlon, H., Connor, R., Cooper, A., Cooper, J., Cooper, S., Correll, C., Corvalan, R., Costanzo, D., Cron, R., Curiel‐Duran, L., Curington, T., Curry, M., Dalrymple, A., Davis, A., Davis, C., Davis, C., Davis, T., De Benedetti, F., De Ranieri, D., Dean, J., Dedeoglu, F., DeGuzman, M., Delnay, N., Dempsey, V., DeSantis, E., Dickson, T., Dingle, J., Donaldson, B., Dorsey, E., Dover, S., Dowling, J., Drew, J., Driest, K., Du, Q., Duarte, K., Durkee, D., Duverger, E., Dvergsten, J., Eberhard, A., Eckert, M., Ede, K., Edelheit, B., Edens, C., Edens, C., Edgerly, Y., Elder, M., Ervin, B., Fadrhonc, S., Failing, C., Fair, D., Falcon, M., Favier, L., Federici, S., Feldman, B., Fennell, J., Ferguson, I., Ferguson, P., Ferreira, B., Ferrucho, R., Fields, K., Finkel, T., Fitzgerald, M., Fleming, C., Flynn, O., Fogel, L., Fox, E., Fox, M., Franco, L., Freeman, M., Fritz, K., Froese, S., Fuhlbrigge, R., Fuller, J., George, N., Gerhold, K., Gerstbacher, D., Gilbert, M., Gillispie‐Taylor, M., Giverc, E., Godiwala, C., Goh, I., Goheer, H., Goldsmith, D., Gotschlich, E., Gotte, A., Gottlieb, B., Gracia, C., Graham, T., Grevich, S., Griffin, T., Griswold, J., Grom, A., Guevara, M., Guittar, P., Guzman, M., Hager, M., Hahn, T., Halyabar, O., Hammelev, E., Hance, M., Hanson, A., Harel, L., Haro, S., Harris, J., Harry, O., Hartigan, E., Hausmann, J., Hay, A., Hayward, K., Heiart, J., Hekl, K., Henderson, L., Henrickson, M., Hersh, A., Hickey, K., Hill, P., Hillyer, S., Hiraki, L., Hiskey, M., Hobday, P., Hoffart, C., Holland, M., Hollander, M., Hong, S., Horwitz, M., Hsu, J., Huber, A., Huggins, J., Hui‐Yuen, J., Hung, C., Huntington, J., Huttenlocher, A., Ibarra, M., Imundo, L., Inman, C., Insalaco, A., Jackson, A., Jackson, S., James, K., Janow, G., Jaquith, J., Jared, S., Johnson, N., Jones, J., Jones, J., Jones, J., Jones, K., Jones, S., Joshi, S., Jung, L., Justice, C., Justiniano, A., Karan, N., Kaufman, K., Kemp, A., Kessler, E., Khalsa, U., Kienzle, B., Kim, S., Kimura, Y., Kingsbury, D., Kitcharoensakkul, M., Klausmeier, T., Klein, K., Klein‐Gitelman, M., Kompelien, B., Kosikowski, A., Kovalick, L., Kracker, J., Kramer, S., Kremer, C., Lai, J., Lam, J., Lang, B., Lapidus, S., Lapin, B., Lasky, A., Latham, D., Lawson, E., Laxer, R., Lee, P., Lee, P., Lee, T., Lentini, L., Lerman, M., Levy, D., Li, S., Lieberman, S., Lim, L., Lin, C., Ling, N., Lingis, M., Lo, M., Lovell, D., Lowman, D., Luca, N., Lvovich, S., Madison, C., Madison, J., Magni Manzoni, S., Malla, B., Maller, J., Malloy, M., Mannion, M., Manos, C., Marques, L., Martyniuk, A., Mason, T., Mathus, S., McAllister, L., McCarthy, K., McConnell, K., McCormick, E., McCurdy, D., McCurdy Stokes, P., McGuire, S., McHale, I., McMonagle, A., McMullen‐Jackson, C., Meidan, E., Mellins, E., Mendoza, E., Mercado, R., Merritt, A., Michalowski, L., Miettunen, P., Miller, M., Milojevic, D., Mirizio, E., Misajon, E., Mitchell, M., Modica, R., Mohan, S., Moore, K., Moorthy, L., Morgan, S., Morgan Dewitt, E., Moss, C., Moussa, T., Mruk, V., Murphy, A., Muscal, E., Nadler, R., Nahal, B., Nanda, K., Nasah, N., Nassi, L., Nativ, S., Natter, M., Neely, J., Nelson, B., Newhall, L., Ng, L., Nicholas, J., Nicolai, R., Nigrovic, P., Nocton, J., Nolan, B., Oberle, E., Obispo, B., O’Brien, B., O’Brien, T., Okeke, O., Oliver, M., Olson, J., O’Neil, K., Onel, K., Orandi, A., Orlando, M., Osei‐Onomah, S., Oz, R., Pagano, E., Paller, A., Pan, N., Panupattanapong, S., Pardeo, M., Paredes, J., Parsons, A., Patel, J., Pentakota, K., Pepmueller, P., Pfeiffer, T., Phillippi, K., Pires Marafon, D., Phillippi, K., Ponder, L., Pooni, R., Prahalad, S., Pratt, S., Protopapas, S., Puplava, B., Quach, J., Quinlan‐Waters, M., Rabinovich, C., Radhakrishna, S., Rafko, J., Raisian, J., Rakestraw, A., Ramirez, C., Ramsay, E., Ramsey, S., Randell, R., Reed, A., Reed, A., Reed, A., Reid, H., Remmel, K., Repp, A., Reyes, A., Richmond, A., Riebschleger, M., Ringold, S., Riordan, M., Riskalla, M., Ritter, M., Rivas‐Chacon, R., Robinson, A., Rodela, E., Rodriquez, M., Rojas, K., Ronis, T., Rosenkranz, M., Rosolowski, B., Rothermel, H., Rothman, D., Roth‐Wojcicki, E., Rouster – Stevens, K., Rubinstein, T., Ruth, N., Saad, N., Sabbagh, S., Sacco, E., Sadun, R., Sandborg, C., Sanni, A., Santiago, L., Sarkissian, A., Savani, S., Scalzi, L., Scharnhorst, S., Schikler, K., Schlefman, A., Schmeling, H., Schmidt, K., Schmitt, E., Schneider, R., Schollaert‐Fitch, K., Schulert, G., Seay, T., Seper, C., Shalen, J., Sheets, R., Shelly, A., Shenoi, S., Shergill, K., Shirley, J., Shishov, M., Shivers, C., Silverman, E., Singer, N., Sivaraman, V., Sletten, J., Smith, A., Smith, C., Smith, J., Smith, J., Smitherman, E., Soep, J., Son, M., Spence, S., Spiegel, L., Spitznagle, J., Sran, R., Srinivasalu, H., Stapp, H., Steigerwald, K., Sterba Rakovchik, Y., Stern, S., Stevens, A., Stevens, B., Stevenson, R., Stewart, K., Stingl, C., Stokes, J., Stringer, E., Sule, S., Sumner, J., Sundel, R., Sutter, M., Syed, R., Syverson, G., Szymanski, A., Taber, S., Tal, R., Tambralli, A., Taneja, A., Tanner, T., Tapani, S., Tarshish, G., Tarvin, S., Tate, L., Taxter, A., Taylor, J., Terry, M., Tesher, M., Thatayatikom, A., Thomas, B., Tiffany, K., Ting, T., Tipp, A., Toib, D., Torok, K., Toruner, C., Tory, H., Toth, M., Tse, S., Tubwell, V., Twilt, M., Uriguen, S., Valcarcel, T., Van Mater, H., Vannoy, L., Varghese, C., Vasquez, N., Vazzana, K., Vehe, R., Veiga, K., Velez, J., Verbsky, J., Vilar, G., Volpe, N., von Scheven, E., Vora, S., Wagner, J., Wagner‐Weiner, L., Wahezi, D., Waite, H., Walker, J., Walters, H., Wampler Muskardin, T., Waqar, L., Waterfield, M., Watson, M., Watts, A., Weiser, P., Weiss, J., Wershba, E., White, A., Williams, C., Wise, A., Woo, J., Woolnough, L., Wright, T., Wu, E., Yalcindag, A., Yee, M., Yen, E., Yeung, R., Yomogida, K., Yu, Q., Zapata, R., Zartoshti, A., Zeft, A., Zeft, R., Zhang, Y., Zhao, Y., Zhu, A., and Zic, C.

Published
2021
Full Text
View/download PDF

7. Health Equity Implications of Missing Data Among Youths With Childhood‐OnsetSystemic Lupus Erythematosus: A Proof‐of‐ConceptStudy in the Childhood Arthritis and Rheumatology Research Alliance Registry

Author

Woo, Jennifer M. P., Simmonds, Faith, Dennos, Anne, Son, Mary Beth F., Lewandowski, Laura B., Rubinstein, Tamar B., Abel, N., Abulaban, K., Adams, A., Adams, M., Agbayani, R., Aiello, J., Akoghlanian, S., Alejandro, C., Allenspach, E., Alperin, R., Alpizar, M., Amarilyo, G., Ambler, W., Anderson, E., Ardoin, S., Armendariz, S., Baker, E., Balboni, I., Balevic, S., Ballenger, L., Ballinger, S., Balmuri, N., Barbar‐Smiley, F., Barillas‐Arias, L., Basiaga, M., Baszis, K., Becker, M., Bell‐Brunson, H., Beltz, E., Benham, H., Benseler, S., Bernal, W., Beukelman, T., Bigley, T., Binstadt, B., Black, C., Blakley, M., Bohnsack, J., Boland, J., Boneparth, A., Bowman, S., Bracaglia, C., Brooks, E., Brothers, M., Brown, A., Brunner, H., Buckley, M., Buckley, M., Bukulmez, H., Bullock, D., Cameron, B., Canna, S., Cannon, L., Carper, P., Cartwright, V., Cassidy, E., Cerracchio, L., Chalom, E., Chang, J., Chang‐Hoftman, A., Chauhan, V., Chira, P., Chinn, T., Chundru, K., Clairman, H., Co, D., Confair, A., Conlon, H., Connor, R., Cooper, A., Cooper, J., Cooper, S., Correll, C., Corvalan, R., Costanzo, D., Cron, R., Curiel‐Duran, L., Curington, T., Curry, M., Dalrymple, A., Davis, A., Davis, C., Davis, C., Davis, T., De Benedetti, F., De Ranieri, D., Dean, J., Dedeoglu, F., DeGuzman, M., Delnay, N., Dempsey, V., DeSantis, E., Dickson, T., Dingle, J., Donaldson, B., Dorsey, E., Dover, S., Dowling, J., Drew, J., Driest, K., Du, Q., Duarte, K., Durkee, D., Duverger, E., Dvergsten, J., Eberhard, A., Eckert, M., Ede, K., Edelheit, B., Edens, C., Edens, C., Edgerly, Y., Elder, M., Ervin, B., Fadrhonc, S., Failing, C., Fair, D., Falcon, M., Favier, L., Federici, S., Feldman, B., Fennell, J., Ferguson, I., Ferguson, P., Ferreira, B., Ferrucho, R., Fields, K., Finkel, T., Fitzgerald, M., Fleming, C., Flynn, O., Fogel, L., Fox, E., Fox, M., Franco, L., Freeman, M., Fritz, K., Froese, S., Fuhlbrigge, R., Fuller, J., George, N., Gerhold, K., Gerstbacher, D., Gilbert, M., Gillispie‐Taylor, M., Giverc, E., Godiwala, C., Goh, I., Goheer, H., Goldsmith, D., Gotschlich, E., Gotte, A., Gottlieb, B., Gracia, C., Graham, T., Grevich, S., Griffin, T., Griswold, J., Grom, A., Guevara, M., Guittar, P., Guzman, M., Hager, M., Hahn, T., Halyabar, O., Hammelev, E., Hance, M., Hanson, A., Harel, L., Haro, S., Harris, J., Harry, O., Hartigan, E., Hausmann, J., Hay, A., Hayward, K., Heiart, J., Hekl, K., Henderson, L., Henrickson, M., Hersh, A., Hickey, K., Hill, P., Hillyer, S., Hiraki, L., Hiskey, M., Hobday, P., Hoffart, C., Holland, M., Hollander, M., Hong, S., Horwitz, M., Hsu, J., Huber, A., Huggins, J., Hui‐Yuen, J., Hung, C., Huntington, J., Huttenlocher, A., Ibarra, M., Imundo, L., Inman, C., Insalaco, A., Jackson, A., Jackson, S., James, K., Janow, G., Jaquith, J., Jared, S., Johnson, N., Jones, J., Jones, J., Jones, J., Jones, K., Jones, S., Joshi, S., Jung, L., Justice, C., Justiniano, A., Karan, N., Kaufman, K., Kemp, A., Kessler, E., Khalsa, U., Kienzle, B., Kim, S., Kimura, Y., Kingsbury, D., Kitcharoensakkul, M., Klausmeier, T., Klein, K., Klein‐Gitelman, M., Kompelien, B., Kosikowski, A., Kovalick, L., Kracker, J., Kramer, S., Kremer, C., Lai, J., Lam, J., Lang, B., Lapidus, S., Lapin, B., Lasky, A., Latham, D., Lawson, E., Laxer, R., Lee, P., Lee, P., Lee, T., Lentini, L., Lerman, M., Levy, D., Li, S., Lieberman, S., Lim, L., Lin, C., Ling, N., Lingis, M., Lo, M., Lovell, D., Lowman, D., Luca, N., Lvovich, S., Madison, C., Madison, J., Manzoni, S. Magni, Malla, B., Maller, J., Malloy, M., Mannion, M., Manos, C., Marques, L., Martyniuk, A., Mason, T., Mathus, S., McAllister, L., McCarthy, K., McConnell, K., McCormick, E., McCurdy, D., Stokes, P. McCurdy, McGuire, S., McHale, I., McMonagle, A., McMullen‐Jackson, C., Meidan, E., Mellins, E., Mendoza, E., Mercado, R., Merritt, A., Michalowski, L., Miettunen, P., Miller, M., Milojevic, D., Mirizio, E., Misajon, E., Mitchell, M., Modica, R., Mohan, S., Moore, K., Moorthy, L., Morgan, S., Dewitt, E. Morgan, Moss, C., Moussa, T., Mruk, V., Murphy, A., Muscal, E., Nadler, R., Nahal, B., Nanda, K., Nasah, N., Nassi, L., Nativ, S., Natter, M., Neely, J., Nelson, B., Newhall, L., Ng, L., Nicholas, J., Nicolai, R., Nigrovic, P., Nocton, J., Nolan, B., Oberle, E., Obispo, B., O'Brien, B., O'Brien, T., Okeke, O., Oliver, M., Olson, J., O'Neil, K., Onel, K., Orandi, A., Orlando, M., Osei‐Onomah, S., Oz, R., Pagano, E., Paller, A., Pan, N., Panupattanapong, S., Pardeo, M., Paredes, J., Parsons, A., Patel, J., Pentakota, K., Pepmueller, P., Pfeiffer, T., Phillippi, K., Phillippi, K., Marafon, D. Pires, Ponder, L., Pooni, R., Prahalad, S., Pratt, S., Protopapas, S., Puplava, B., Quach, J., Quinlan‐Waters, M., Rabinovich, C., Radhakrishna, S., Rafko, J., Raisian, J., Rakestraw, A., Ramirez, C., Ramsay, E., Ramsey, S., Randell, R., Reed, A., Reed, A., Reed, A., Reid, H., Remmel, K., Repp, A., Reyes, A., Richmond, A., Riebschleger, M., Ringold, S., Riordan, M., Riskalla, M., Ritter, M., Rivas‐Chacon, R., Robinson, A., Rodela, E., Rodriquez, M., Rojas, K., Ronis, T., Rosenkranz, M., Rosolowski, B., Rothermel, H., Rothman, D., Roth‐Wojcicki, E., Rouster‐Stevens, K., Rubinstein, T., Ruth, N., Saad, N., Sabbagh, S., Sacco, E., Sadun, R., Sandborg, C., Sanni, A., Santiago, L., Sarkissian, A., Savani, S., Scalzi, L., Schanberg, L., Scharnhorst, S., Schikler, K., Schlefman, A., Schmeling, H., Schmidt, K., Schmitt, E., Schneider, R., Schollaert‐Fitch, K., Schulert, G., Seay, T., Seper, C., Shalen, J., Sheets, R., Shelly, A., Shenoi, S., Shergill, K., Shirley, J., Shishov, M., Shivers, C., Silverman, E., Singer, N., Sivaraman, V., Sletten, J., Smith, A., Smith, C., Smith, J., Smith, J., Smitherman, E., Soep, J., Son, M., Spence, S., Spiegel, L., Spitznagle, J., Sran, R., Srinivasalu, H., Stapp, H., Steigerwald, K., Rakovchik, Y. Sterba, Stern, S., Stevens, A., Stevens, B., Stevenson, R., Stewart, K., Stingl, C., Stokes, J., Stoll, M., Stringer, E., Sule, S., Sumner, J., Sundel, R., Sutter, M., Syed, R., Syverson, G., Szymanski, A., Taber, S., Tal, R., Tambralli, A., Taneja, A., Tanner, T., Tapani, S., Tarshish, G., Tarvin, S., Tate, L., Taxter, A., Taylor, J., Terry, M., Tesher, M., Thatayatikom, A., Thomas, B., Tiffany, K., Ting, T., Tipp, A., Toib, D., Torok, K., Toruner, C., Tory, H., Toth, M., Tse, S., Tubwell, V., Twilt, M., Uriguen, S., Valcarcel, T., Van Mater, H., Vannoy, L., Varghese, C., Vasquez, N., Vazzana, K., Vehe, R., Veiga, K., Velez, J., Verbsky, J., Vilar, G., Volpe, N., Scheven, E., Vora, S., Wagner, J., Wagner‐Weiner, L., Wahezi, D., Waite, H., Walker, J., Walters, H., Muskardin, T. Wampler, Waqar, L., Waterfield, M., Watson, M., Watts, A., Weiser, P., Weiss, J., Weiss, P., Wershba, E., White, A., Williams, C., Wise, A., Woo, J., Woolnough, L., Wright, T., Wu, E., Yalcindag, A., Yee, M., Yen, E., Yeung, R., Yomogida, K., Yu, Q., Zapata, R., Zartoshti, A., Zeft, A., Zeft, R., Zhang, Y., Zhao, Y., Zhu, A., and Zic, C.

Abstract

Health disparities in childhood‐onset systemic lupus erythematosus (SLE) disproportionately impact marginalized populations. Socioeconomically patterned missing data can magnify existing health inequities by supporting inferences that may misrepresent populations of interest. Our objective was to assess missing data and subsequent health equity implications among participants with childhood‐onset SLE enrolled in a large pediatric rheumatology registry. We evaluated co‐missingness of 12 variables representing demographics, socioeconomic position, and clinical factors (e.g., disease‐related indices) using Childhood Arthritis and Rheumatology Research Alliance Registry childhood‐onset SLE enrollment data (2015–2022; n = 766). We performed logistic regression to calculate odds ratios (ORs) and 95% confidence intervals (95% CIs) for missing disease‐related indices at enrollment (Systemic Lupus Erythematosus Disease Activity Index 2000 [SLEDAI‐2K] and/or Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index [SDI]) associated with data missingness. We used linear regression to assess the association between socioeconomic factors and SLEDAI‐2K at enrollment using 3 analytic methods for missing data: complete case analysis, multiple imputation, and nonprobabilistic bias analyses, with missing values imputed to represent extreme low or high disadvantage. On average, participants were missing 6.2% of data, with over 50% of participants missing at least 1 variable. Missing data correlated most closely with variables within data categories (i.e., demographic). Government‐assisted health insurance was associated with missing SLEDAI‐2K and/or SDI scores compared to private health insurance (OR 2.04 [95% CI 1.22, 3.41]). The different analytic approaches resulted in varying analytic sample sizes and fundamentally conflicting estimated associations. Our results support intentional evaluation of missing data to inform effect estimate interpretation and critical assessment of causal statements that might otherwise misrepresent health inequities.

Published
2023
Full Text
View/download PDF

8. Inflammatory bowel disease in children with systemic juvenile idiopathic arthritis

Author

Maller, Justine, Fox, Emily, Park, K. T., Paul, Sarah Sertial, Baszis, Kevin, Borocco, Charlotte, Prahalad, Sampath, Quartier, Pierre, Reinhardt, Adam, Schonenberg-Meinema, Dieneke, Shipman-Duensing, Lauren, Terreri, Maria Teresa, Simard, Julia, Lavi, Idit, Chalom, Elizabeth, Hsu, Joyce, Zisman, Devy, Mellins, Elizabeth D., Abramson, L., Anderson, E., Andrew, M., Battle, N., Becker, M., Benham, H., Beukelman, T., Birmingham, J., Blier, P., Brown, A., Brunner, H., Cabrera, A., Canter, D., Carlton, D., Caruso, B., Ceracchio, L., Chang, J., Charpentier, P., Clark, K., Dean, J., Dedeoglu, F., Feldman, B., Ferguson, P., Fox, M., Francis, K., Gervasini, M., Goldsmith, D., Gorton, G., Gottlieb, B., Graham, T., Griffin, T., Grosbein, H., Graduate School, Paediatric Infectious Diseases / Rheumatology / Immunology, AII - Inflammatory diseases, and Amsterdam Gastroenterology Endocrinology Metabolism

Subjects
0301 basic medicine, medicine.medical_specialty, Immunology, Arthritis, Cytokine inhibitors, Inflammatory bowel disease, digestive system, Article, Etanercept, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Systemic juvenile idiopathic arthritis, Internal medicine, Humans, Immunology and Allergy, Medicine, Pediatric rheumatology, Registries, Family history, Child, 030203 arthritis & rheumatology, business.industry, Macrophage Activation Syndrome, Incidence (epidemiology), Inflammatory Bowel Diseases, medicine.disease, Arthritis, Juvenile, digestive system diseases, Canakinumab, 030104 developmental biology, Macrophage activation syndrome, Cohort, Autoinflammation, business, medicine.drug
Abstract

ObjectiveThe incidence of inflammatory bowel disease (IBD) in juvenile idiopathic arthritis (JIA) is higher than in the general pediatric population. However, reports of IBD in the systemic JIA (sJIA) subtype are limited. We sought to characterize sJIA patients diagnosed with IBD and to identify potential contributing risk factors.MethodsUsing an internationally distributed survey, we identified 16 patients with sJIA who were subsequently diagnosed with IBD (sJIA-IBD cohort). Five hundred twenty-two sJIA patients without IBD were identified from the CARRA Legacy Registry and served as the sJIA-only cohort for comparison. Differences in demographic, clinical characteristics, and therapy were assessed using chi-square test, Fisher exact test,t-test, and univariate and multivariate logistic regression, as appropriate.ResultsOf the patients with sJIA-IBD, 75% had a persistent sJIA course and 25% had a history of macrophage activation syndrome. sJIA-IBD subjects were older at sJIA diagnosis, more often non-White, had a higher rate of IBD family history, and were more frequently treated with etanercept or canakinumab compared to sJIA-only subjects. Sixty-nine percent of sJIA-IBD patients successfully discontinued sJIA medications following IBD diagnosis, and sJIA symptoms resolved in 9 of 12 patients treated with tumor necrosis factor-α (TNF-α) inhibitors.ConclusionIBD in the setting of sJIA is a rare occurrence. The favorable response of sJIA symptoms to therapeutic TNF-α inhibition suggests that the sJIA-IBD cohort may represent a mechanistically distinct sJIA subgroup. Our study highlights the importance of maintaining a high level of suspicion for IBD when gastrointestinal involvement occurs in patients with sJIA and the likely broad benefit of TNF-α inhibition in those cases.

Published
2021

9. Childhood‐OnsetLupus Nephritis in the Childhood Arthritis and Rheumatology Research Alliance Registry: Short‐TermKidney Status and Variation in Care

Author

Smitherman, Emily A., Chahine, Rouba A., Beukelman, Timothy, Lewandowski, Laura B., Rahman, A. K. M. Fazlur, Wenderfer, Scott E., Curtis, Jeffrey R., Hersh, Aimee O., Abel, N., Abulaban, K., Adams, A., Adams, M., Agbayani, R., Aiello, J., Akoghlanian, S., Alejandro, C., Allenspach, E., Alperin, R., Alpizar, M., Amarilyo, G., Ambler, W., Anderson, E., Ardoin, S., Armendariz, S., Baker, E., Balboni, I., Balevic, S., Ballenger, L., Ballinger, S., Balmuri, N., Barbar‐Smiley, F., Barillas‐Arias, L., Basiaga, M., Baszis, K., Becker, M., Bell‐Brunson, H., Beltz, E., Benham, H., Benseler, S., Bernal, W., Beukelman, T., Bigley, T., Binstadt, B., Black, C., Blakley, M., Bohnsack, J., Boland, J., Boneparth, A., Bowman, S., Bracaglia, C., Brooks, E., Brothers, M., Brown, A., Brunner, H., Buckley, M., Buckley, M., Bukulmez, H., Bullock, D., Cameron, B., Canna, S., Cannon, L., Carper, P., Cartwright, V., Cassidy, E., Cerracchio, L., Chalom, E., Chang, J., Chang‐Hoftman, A., Chauhan, V., Chira, P., Chinn, T., Chundru, K., Clairman, H., Co, D., Confair, A., Conlon, H., Connor, R., Cooper, A., Cooper, J., Cooper, S., Correll, C., Corvalan, R., Costanzo, D., Cron, R., Curiel‐Duran, L., Curington, T., Curry, M., Dalrymple, A., Davis, A., Davis, C., Davis, C., Davis, T., De Benedetti, F., De Ranieri, D., Dean, J., Dedeoglu, F., DeGuzman, M., Delnay, N., Dempsey, V., DeSantis, E., Dickson, T., Dingle, J., Donaldson, B., Dorsey, E., Dover, S., Dowling, J., Drew, J., Driest, K., Du, Q., Duarte, K., Durkee, D., Duverger, E., Dvergsten, J., Eberhard, A., Eckert, M., Ede, K., Edelheit, B., Edens, C., Edens, C., Edgerly, Y., Elder, M., Ervin, B., Fadrhonc, S., Failing, C., Fair, D., Falcon, M., Favier, L., Federici, S., Feldman, B., Fennell, J., Ferguson, I., Ferguson, P., Ferreira, B., Ferrucho, R., Fields, K., Finkel, T., Fitzgerald, M., Fleming, C., Flynn, O., Fogel, L., Fox, E., Fox, M., Franco, L., Freeman, M., Fritz, K., Froese, S., Fuhlbrigge, R., Fuller, J., George, N., Gerhold, K., Gerstbacher, D., Gilbert, M., Gillispie‐Taylor, M., Giverc, E., Godiwala, C., Goh, I., Goheer, H., Goldsmith, D., Gotschlich, E., Gotte, A., Gottlieb, B., Gracia, C., Graham, T., Grevich, S., Griffin, T., Griswold, J., Grom, A., Guevara, M., Guittar, P., Guzman, M., Hager, M., Hahn, T., Halyabar, O., Hammelev, E., Hance, M., Hanson, A., Harel, L., Haro, S., Harris, J., Harry, O., Hartigan, E., Hausmann, J., Hay, A., Hayward, K., Heiart, J., Hekl, K., Henderson, L., Henrickson, M., Hersh, A., Hickey, K., Hill, P., Hillyer, S., Hiraki, L., Hiskey, M., Hobday, P., Hoffart, C., Holland, M., Hollander, M., Hong, S., Horwitz, M., Hsu, J., Huber, A., Huggins, J., Hui‐Yuen, J., Hung, C., Huntington, J., Huttenlocher, A., Ibarra, M., Imundo, L., Inman, C., Insalaco, A., Jackson, A., Jackson, S., James, K., Janow, G., Jaquith, J., Jared, S., Johnson, N., Jones, J., Jones, J., Jones, J., Jones, K., Jones, S., Joshi, S., Jung, L., Justice, C., Justiniano, A., Karan, N., Kaufman, K., Kemp, A., Kessler, E., Khalsa, U., Kienzle, B., Kim, S., Kimura, Y., Kingsbury, D., Kitcharoensakkul, M., Klausmeier, T., Klein, K., Klein‐Gitelman, M., Kompelien, B., Kosikowski, A., Kovalick, L., Kracker, J., Kramer, S., Kremer, C., Lai, J., Lam, J., Lang, B., Lapidus, S., Lapin, B., Lasky, A., Latham, D., Lawson, E., Laxer, R., Lee, P., Lee, P., Lee, T., Lentini, L., Lerman, M., Levy, D., Li, S., Lieberman, S., Lim, L., Lin, C., Ling, N., Lingis, M., Lo, M., Lovell, D., Lowman, D., Luca, N., Lvovich, S., Madison, C., Madison, J., Manzoni, S. Magni, Malla, B., Maller, J., Malloy, M., Mannion, M., Manos, C., Marques, L., Martyniuk, A., Mason, T., Mathus, S., McAllister, L., McCarthy, K., McConnell, K., McCormick, E., McCurdy, D., Stokes, P. McCurdy, McGuire, S., McHale, I., McMonagle, A., McMullen‐Jackson, C., Meidan, E., Mellins, E., Mendoza, E., Mercado, R., Merritt, A., Michalowski, L., Miettunen, P., Miller, M., Milojevic, D., Mirizio, E., Misajon, E., Mitchell, M., Modica, R., Mohan, S., Moore, K., Moorthy, L., Morgan, S., Dewitt, E. Morgan, Moss, C., Moussa, T., Mruk, V., Murphy, A., Muscal, E., Nadler, R., Nahal, B., Nanda, K., Nasah, N., Nassi, L., Nativ, S., Natter, M., Neely, J., Nelson, B., Newhall, L., Ng, L., Nicholas, J., Nicolai, R., Nigrovic, P., Nocton, J., Nolan, B., Oberle, E., Obispo, B., O'Brien, B., O'Brien, T., Okeke, O., Oliver, M., Olson, J., O'Neil, K., Onel, K., Orandi, A., Orlando, M., Osei‐Onomah, S., Oz, R., Pagano, E., Paller, A., Pan, N., Panupattanapong, S., Pardeo, M., Paredes, J., Parsons, A., Patel, J., Pentakota, K., Pepmueller, P., Pfeiffer, T., Phillippi, K., Marafon, D. Pires, Phillippi, K., Ponder, L., Pooni, R., Prahalad, S., Pratt, S., Protopapas, S., Puplava, B., Quach, J., Quinlan‐Waters, M., Rabinovich, C., Radhakrishna, S., Rafko, J., Raisian, J., Rakestraw, A., Ramirez, C., Ramsay, E., Ramsey, S., Randell, R., Reed, A., Reed, A., Reed, A., Reid, H., Remmel, K., Repp, A., Reyes, A., Richmond, A., Riebschleger, M., Ringold, S., Riordan, M., Riskalla, M., Ritter, M., Rivas‐Chacon, R., Robinson, A., Rodela, E., Rodriquez, M., Rojas, K., Ronis, T., Rosenkranz, M., Rosolowski, B., Rothermel, H., Rothman, D., Roth‐Wojcicki, E., Rouster – Stevens, K., Rubinstein, T., Ruth, N., Saad, N., Sabbagh, S., Sacco, E., Sadun, R., Sandborg, C., Sanni, A., Santiago, L., Sarkissian, A., Savani, S., Scalzi, L., Schanberg, L., Scharnhorst, S., Schikler, K., Schlefman, A., Schmeling, H., Schmidt, K., Schmitt, E., Schneider, R., Schollaert‐Fitch, K., Schulert, G., Seay, T., Seper, C., Shalen, J., Sheets, R., Shelly, A., Shenoi, S., Shergill, K., Shirley, J., Shishov, M., Shivers, C., Silverman, E., Singer, N., Sivaraman, V., Sletten, J., Smith, A., Smith, C., Smith, J., Smith, J., Smitherman, E., Soep, J., Son, M., Spence, S., Spiegel, L., Spitznagle, J., Sran, R., Srinivasalu, H., Stapp, H., Steigerwald, K., Rakovchik, Y. Sterba, Stern, S., Stevens, A., Stevens, B., Stevenson, R., Stewart, K., Stingl, C., Stokes, J., Stoll, M., Stringer, E., Sule, S., Sumner, J., Sundel, R., Sutter, M., Syed, R., Syverson, G., Szymanski, A., Taber, S., Tal, R., Tambralli, A., Taneja, A., Tanner, T., Tapani, S., Tarshish, G., Tarvin, S., Tate, L., Taxter, A., Taylor, J., Terry, M., Tesher, M., Thatayatikom, A., Thomas, B., Tiffany, K., Ting, T., Tipp, A., Toib, D., Torok, K., Toruner, C., Tory, H., Toth, M., Tse, S., Tubwell, V., Twilt, M., Uriguen, S., Valcarcel, T., Van Mater, H., Vannoy, L., Varghese, C., Vasquez, N., Vazzana, K., Vehe, R., Veiga, K., Velez, J., Verbsky, J., Vilar, G., Volpe, N., Scheven, E., Vora, S., Wagner, J., Wagner‐Weiner, L., Wahezi, D., Waite, H., Walker, J., Walters, H., Muskardin, T. Wampler, Waqar, L., Waterfield, M., Watson, M., Watts, A., Weiser, P., Weiss, J., Weiss, P., Wershba, E., White, A., Williams, C., Wise, A., Woo, J., Woolnough, L., Wright, T., Wu, E., Yalcindag, A., Yee, M., Yen, E., Yeung, R., Yomogida, K., Yu, Q., Zapata, R., Zartoshti, A., Zeft, A., Zeft, R., Zhang, Y., Zhao, Y., Zhu, A., and Zic, C.

Abstract

The goal was to characterize short‐term kidney status and describe variation in early care utilization in a multicenter cohort of patients with childhood‐onset systemic lupus erythematosus (cSLE) and nephritis. We analyzed previously collected prospective data from North American patients with cSLE with kidney biopsy‐proven nephritis enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry from March 2017 through December 2019. We determined the proportion of patients with abnormal kidney status at the most recent registry visit and applied generalized linear mixed models to identify associated factors. We also calculated frequency of medication use, both during induction and ever recorded. We identified 222 patients with kidney biopsy–proven nephritis, with 64% class III/IV nephritis on initial biopsy. At the most recent registry visit at median (interquartile range) of 17 (8–29) months from initial kidney biopsy, 58 of 106 patients (55%) with available data had abnormal kidney status. This finding was associated with male sex (odds ratio [OR] 3.88, 95% confidence interval [95% CI] 1.21–12.46) and age at cSLE diagnosis (OR 1.23, 95% CI 1.01–1.49). Patients with class IV nephritis were more likely than class III to receive cyclophosphamide and rituximab during induction. There was substantial variation in mycophenolate, cyclophosphamide, and rituximab ever use patterns across rheumatology centers. In this cohort with predominately class III/IV nephritis, male sex and older age at cSLE diagnosis were associated with abnormal short‐term kidney status. We also observed substantial variation in contemporary medication use for pediatric lupus nephritis between pediatric rheumatology centers. Additional studies are needed to better understand the impact of this variation on long‐term kidney outcomes.

Published
2023
Full Text
View/download PDF

11. Disease Recapture Rates After Medication Discontinuation and Flare in Juvenile Idiopathic Arthritis: An Observational Study Within the Childhood Arthritis and Rheumatology Research Alliance Registry

Author

Ringold, Sarah, Dennos, Anne C., Kimura, Yukiko, Beukelman, Timothy, Shrader, Peter, Phillips, Thomas A., Kohlheim, Melanie, Schanberg, Laura E., Yeung, Rae S. M., Horton, Daniel B., Abel, N., Abulaban, K., Adams, A., Adams, M., Agbayani, R., Aiello, J., Akoghlanian, S., Alejandro, C., Allenspach, E., Alperin, R., Alpizar, M., Amarilyo, G., Ambler, W., Anderson, E., Ardoin, S., Armendariz, S., Baker, E., Balboni, I., Balevic, S., Ballenger, L., Ballinger, S., Balmuri, N., Barbar‐Smiley, F., Barillas‐Arias, L., Basiaga, M., Baszis, K., Becker, M., Bell‐Brunson, H., Beltz, E., Benham, H., Benseler, S., Bernal, W., Beukelman, T., Bigley, T., Binstadt, B., Black, C., Blakley, M., Bohnsack, J., Boland, J., Boneparth, A., Bowman, S., Bracaglia, C., Brooks, E., Brothers, M., Brown, A., Brunner, H., Buckley, M., Buckley, M., Bukulmez, H., Bullock, D., Cameron, B., Canna, S., Cannon, L., Carper, P., Cartwright, V., Cassidy, E., Cerracchio, L., Chalom, E., Chang, J., Chang‐Hoftman, A., Chauhan, V., Chira, P., Chinn, T., Chundru, K., Clairman, H., Co, D., Confair, A., Conlon, H., Connor, R., Cooper, A., Cooper, J., Cooper, S., Correll, C., Corvalan, R., Costanzo, D., Cron, R., Curiel‐Duran, L., Curington, T., Curry, M., Dalrymple, A., Davis, A., Davis, C., Davis, C., Davis, T., De Benedetti, F., De Ranieri, D., Dean, J., Dedeoglu, F., DeGuzman, M., Delnay, N., Dempsey, V., DeSantis, E., Dickson, T., Dingle, J., Donaldson, B., Dorsey, E., Dover, S., Dowling, J., Drew, J., Driest, K., Du, Q., Duarte, K., Durkee, D., Duverger, E., Dvergsten, J., Eberhard, A., Eckert, M., Ede, K., Edelheit, B., Edens, C., Edens, C., Edgerly, Y., Elder, M., Ervin, B., Fadrhonc, S., Failing, C., Fair, D., Falcon, M., Favier, L., Federici, S., Feldman, B., Fennell, J., Ferguson, I., Ferguson, P., Ferreira, B., Ferrucho, R., Fields, K., Finkel, T., Fitzgerald, M., Fleming, C., Flynn, O., Fogel, L., Fox, E., Fox, M., Franco, L., Freeman, M., Fritz, K., Froese, S., Fuhlbrigge, R., Fuller, J., George, N., Gerhold, K., Gerstbacher, D., Gilbert, M., Gillispie‐Taylor, M., Giverc, E., Godiwala, C., Goh, I., Goheer, H., Goldsmith, D., Gotschlich, E., Gotte, A., Gottlieb, B., Gracia, C., Graham, T., Grevich, S., Griffin, T., Griswold, J., Grom, A., Guevara, M., Guittar, P., Guzman, M., Hager, M., Hahn, T., Halyabar, O., Hammelev, E., Hance, M., Hanson, A., Harel, L., Haro, S., Harris, J., Harry, O., Hartigan, E., Hausmann, J., Hay, A., Hayward, K., Heiart, J., Hekl, K., Henderson, L., Henrickson, M., Hersh, A., Hickey, K., Hill, P., Hillyer, S., Hiraki, L., Hiskey, M., Hobday, P., Hoffart, C., Holland, M., Hollander, M., Hong, S., Horwitz, M., Hsu, J., Huber, A., Huggins, J., Hui‐Yuen, J., Hung, C., Huntington, J., Huttenlocher, A., Ibarra, M., Imundo, L., Inman, C., Insalaco, A., Jackson, A., Jackson, S., James, K., Janow, G., Jaquith, J., Jared, S., Johnson, N., Jones, J., Jones, J., Jones, J., Jones, K., Jones, S., Joshi, S., Jung, L., Justice, C., Justiniano, A., Karan, N., Kaufman, K., Kemp, A., Kessler, E., Khalsa, U., Kienzle, B., Kim, S., Kimura, Y., Kingsbury, D., Kitcharoensakkul, M., Klausmeier, T., Klein, K., Klein‐Gitelman, M., Kompelien, B., Kosikowski, A., Kovalick, L., Kracker, J., Kramer, S., Kremer, C., Lai, J., Lam, J., Lang, B., Lapidus, S., Lapin, B., Lasky, A., Latham, D., Lawson, E., Laxer, R., Lee, P., Lee, P., Lee, T., Lentini, L., Lerman, M., Levy, D., Li, S., Lieberman, S., Lim, L., Lin, C., Ling, N., Lingis, M., Lo, M., Lovell, D., Lowman, D., Luca, N., Lvovich, S., Madison, C., Madison, J., Magni Manzoni, S., Malla, B., Maller, J., Malloy, M., Mannion, M., Manos, C., Marques, L., Martyniuk, A., Mason, T., Mathus, S., McAllister, L., McCarthy, K., McConnell, K., McCormick, E., McCurdy, D., Stokes, P. McCurdy, McGuire, S., McHale, I., McMonagle, A., McMullen‐Jackson, C., Meidan, E., Mellins, E., Mendoza, E., Mercado, R., Merritt, A., Michalowski, L., Miettunen, P., Miller, M., Milojevic, D., Mirizio, E., Misajon, E., Mitchell, M., Modica, R., Mohan, S., Moore, K., Moorthy, L., Morgan, S., Dewitt, E. Morgan, Moss, C., Moussa, T., Mruk, V., Murphy, A., Muscal, E., Nadler, R., Nahal, B., Nanda, K., Nasah, N., Nassi, L., Nativ, S., Natter, M., Neely, J., Nelson, B., Newhall, L., Ng, L., Nicholas, J., Nicolai, R., Nigrovic, P., Nocton, J., Nolan, B., Oberle, E., Obispo, B., O'Brien, B., O'Brien, T., Okeke, O., Oliver, M., Olson, J., O'Neil, K., Onel, K., Orandi, A., Orlando, M., Osei‐Onomah, S., Oz, R., Pagano, E., Paller, A., Pan, N., Panupattanapong, S., Pardeo, M., Paredes, J., Parsons, A., Patel, J., Pentakota, K., Pepmueller, P., Pfeiffer, T., Phillippi, K., Marafon, D. Pires, Phillippi, K., Ponder, L., Pooni, R., Prahalad, S., Pratt, S., Protopapas, S., Puplava, B., Quach, J., Quinlan‐Waters, M., Rabinovich, C., Radhakrishna, S., Rafko, J., Raisian, J., Rakestraw, A., Ramirez, C., Ramsay, E., Ramsey, S., Randell, R., Reed, A., Reed, A., Reed, A., Reid, H., Remmel, K., Repp, A., Reyes, A., Richmond, A., Riebschleger, M., Ringold, S., Riordan, M., Riskalla, M., Ritter, M., Rivas‐Chacon, R., Robinson, A., Rodela, E., Rodriquez, M., Rojas, K., Ronis, T., Rosenkranz, M., Rosolowski, B., Rothermel, H., Rothman, D., Roth‐Wojcicki, E., Rouster – Stevens, K., Rubinstein, T., Ruth, N., Saad, N., Sabbagh, S., Sacco, E., Sadun, R., Sandborg, C., Sanni, A., Santiago, L., Sarkissian, A., Savani, S., Scalzi, L., Schanberg, L., Scharnhorst, S., Schikler, K., Schlefman, A., Schmeling, H., Schmidt, K., Schmitt, E., Schneider, R., Schollaert‐Fitch, K., Schulert, G., Seay, T., Seper, C., Shalen, J., Sheets, R., Shelly, A., Shenoi, S., Shergill, K., Shirley, J., Shishov, M., Shivers, C., Silverman, E., Singer, N., Sivaraman, V., Sletten, J., Smith, A., Smith, C., Smith, J., Smith, J., Smitherman, E., Soep, J., Son, M., Spence, S., Spiegel, L., Spitznagle, J., Sran, R., Srinivasalu, H., Stapp, H., Steigerwald, K., Rakovchik, Y. Sterba, Stern, S., Stevens, A., Stevens, B., Stevenson, R., Stewart, K., Stingl, C., Stokes, J., Stoll, M., Stringer, E., Sule, S., Sumner, J., Sundel, R., Sutter, M., Syed, R., Syverson, G., Szymanski, A., Taber, S., Tal, R., Tambralli, A., Taneja, A., Tanner, T., Tapani, S., Tarshish, G., Tarvin, S., Tate, L., Taxter, A., Taylor, J., Terry, M., Tesher, M., Thatayatikom, A., Thomas, B., Tiffany, K., Ting, T., Tipp, A., Toib, D., Torok, K., Toruner, C., Tory, H., Toth, M., Tse, S., Tubwell, V., Twilt, M., Uriguen, S., Valcarcel, T., Van Mater, H., Vannoy, L., Varghese, C., Vasquez, N., Vazzana, K., Vehe, R., Veiga, K., Velez, J., Verbsky, J., Vilar, G., Volpe, N., Scheven, E., Vora, S., Wagner, J., Wagner‐Weiner, L., Wahezi, D., Waite, H., Walker, J., Walters, H., Muskardin, T. Wampler, Waqar, L., Waterfield, M., Watson, M., Watts, A., Weiser, P., Weiss, J., Weiss, P., Wershba, E., White, A., Williams, C., Wise, A., Woo, J., Woolnough, L., Wright, T., Wu, E., Yalcindag, A., Yee, M., Yen, E., Yeung, R., Yomogida, K., Yu, Q., Zapata, R., Zartoshti, A., Zeft, A., Zeft, R., Zhang, Y., Zhao, Y., Zhu, A., and Zic, C.

Abstract

Children with well‐controlled juvenile idiopathic arthritis (JIA) frequently experience flares after medication discontinuation, but the outcomes of these flares have not been well described. The objective of this study was to characterize the rates and predictors of disease recapture among children with JIA who restarted medication to treat disease flare. Children with JIA who discontinued conventional synthetic or biologic disease‐modifying antirheumatic drugs for well‐controlled disease but subsequently experienced a flare and restarted medication were identified from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry. The primary outcome was inactive disease (ID) (physician global assessment <1 and active joint count = 0) 6 months after flare. A total of 333 patients had complete data for ID at 6 months after flare. The recapture rate for the cohort was 55%, ranging from 47% (persistent oligoarthritis) to 69% (systemic arthritis) (P= 0.4). Approximately 67% of children achieved ID by 12 months. In the multivariable model, history and reinitiation of biologic drugs were associated with increased odds of successful recapture (odds ratio [OR] 4.79 [95% confidence interval (95% CI) 1.22–18.78] and OR 2.74 [95% CI 1.62–4.63], respectively). Number of joints with limited range of motion was associated with decreased odds (OR 0.83 per 1 joint increase [95% CI 0.72–0.95]). Approximately half of JIA flares post‐discontinuation were recaptured within 6 months, but rates of recapture varied across JIA categories. These findings inform shared decision‐making for patients, families, and clinicians regarding the risks and benefits of medication discontinuation. Better understanding of biologic predictors of successful recapture in JIA are needed.

Published
2023
Full Text
View/download PDF

13. The effect of glucocorticoids on Thrombospondin-1, Osteocalcin and the Thrombospondin-1:Osteocalcin ratio in humans

Author

Cesana-Nigro, N, Keshvari, S, Barclay, JL, Sorbello, J, Upham, JW, Benham, H, Anderson, ST, Steiger, N, Prins, JB, Inder, WJ, Cesana-Nigro, N, Keshvari, S, Barclay, JL, Sorbello, J, Upham, JW, Benham, H, Anderson, ST, Steiger, N, Prins, JB, and Inder, WJ

Abstract

OBJECTIVE: Thrombospondin-1 (TSP1), a matricellular protein, and Osteocalcin (OCN), a noncollagenous protein secreted by osteoblasts, are known to be up- and down-regulated, respectively, by glucocorticoids. The aim of this study was to determine whether a ratio between TSP1:OCN was altered by changes in glucocorticoid activity in humans. DESIGN: Prospective observational study. SETTING: Tertiary university hospital in Queensland, Australia. PATIENTS AND MEASUREMENTS: Patients with Cushing's syndrome (CS, n = 19), asthma or giant cell arteritis on chronic prednisolone treatment (PRED, n = 13), adrenal insufficiency (AI, n = 16) and healthy volunteers (HV, n = 20). Plasma TSP1 and serum total OCN were measured by immunoassay at 0800h, 1200h and 1600h in patients with CS, patients with AI taking replacement glucocorticoids, HV before and after 4 mg dexamethasone and PRED patients predose at 800 and 4 hours post-dose at 1200 hours. RESULTS: Plasma TSP1 in CS was higher (P < .0001), and serum OCN was lower (P < .0001) than HV. The TSP1:OCN ratio in HV increased significantly after 4 mg dexamethasone (P < .0001) and in AI after taking their hydrocortisone replacement therapy (P < .001). PRED patients had a higher TSP1:OCN ratio compared with HV at both 800 and 1200 hours (both P < .001), but no significant change occurred from pre- to post-dose. A TSP1:OCN ratio of >73 at 800 hours differentiated CS from HV with a sensitivity of 95% and a specificity of 100%. CONCLUSIONS: The TSP1:OCN ratio is elevated in patients on prednisolone and in patients with CS compared with healthy volunteers. It may be a useful biomarker of total body glucocorticoid activity in humans.

Published
2019

16. Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry.

Author

Tory, Heather, Zurakowski, David, Kim, Susan, the CARRA Juvenile Dermatomyositis Quality Measures Workgroup for the CARRA Registry Investigators, Abramson, L., Anderson, E., Andrew, M., Battle, N., Becker, M., Benham, H., Beukelman, T., Birmingham, J., Blier, P., Brown, A., Brunner, H., Cabrera, A., Canter, D., Carlton, D., Caruso, B., and Ceracchio, L.

Subjects
JUVENILE diseases, DERMATOMYOSITIS, PHYSICIANS, RHEUMATOLOGY, ARTHRITIS, FUNCTIONAL independence measure, MYOSITIS, POLYMYOSITIS
Abstract

Background: Global disease activity scores (gVAS) capture patient or family (PF) and physician (MD) assessments of disease. This study sought to measure discordance between PF and MD global activity scores in juvenile dermatomyositis (JDM), and determine factors associated with discordance. Methods: Patients with JDM were included from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry (N = 563). PF and MD gVAS were assessed for discordance, defined as a ≥ 2-point difference. Factors associated with discordant gVAS were compared in univariate analysis. Multivariable regression analysis was used to identify predictors of discordance. Results: Almost 40% (N = 219) of PF and MD gVAS were discordant. Among discordant scores, 68% of PF rated gVAS ≥2-points above MD, which was associated with calcinosis and lower quality of life and functional scores (p < 0.01). MD gVAS rated ≥2-points above PF in 32%, which was associated with abnormal laboratory results, weakness, arthritis, rash and other skin changes, and current intravenous steroid treatment (p < 0.01). In multivariate analysis, predictors for higher PF rating included calcinosis, lower quality of life and functional scores, while predictors for higher MD rating included rash, calcinosis, nailfold capillaroscopy changes, and current intravenous steroid treatment. Conclusions: Discordance between PF and MD gVAS was common in this JDM cohort. Overall, higher PF rating was associated with poorer patient reported outcome (PRO) scores, while higher MD rating was associated with poorer objective measures. This suggests PF and MD assessments of gVAS may be measuring different aspects of disease, highlighting the importance of integrating PROs into clinical practice and research. [ABSTRACT FROM AUTHOR]

Published
2020
Full Text
View/download PDF

17. Association of Short-Term Ultraviolet Radiation Exposure and Disease Severity in Juvenile Dermatomyositis: Results From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry.

Author

Neely, Jessica, Long, Craig S., Sturrock, Hugh, Kim, Susan, Abramson, L., Anderson, E., Andrew, M., Battle, N., Becker, M., Benham, H., Beukelman, T., Birmingham, J., Blier, P., Brown, A., Brunner, H., Cabrera, A., Canter, D., Carlton, D., Caruso, B., and Ceracchio, L.

Abstract

Objective: Ultraviolet (UV) radiation is considered to be an important environmental factor in the clinical course of children with juvenile dermatomyositis (DM). We aimed to evaluate the association between UV radiation and severe disease outcomes in juvenile DM.Methods: This is a cross-sectional study of patients with juvenile DM enrolled in the US multicenter Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry from 2010 to 2015. The mean UV index (UVI) in the calendar month prior to symptom onset in each subject's zip code was calculated from daily satellite solar noon measurements. Multivariable logistic regression was used to model the relationship between the mean UVI and calcinosis as well as other outcomes of severe disease. Covariates included sex, race, age, time to diagnosis, disease duration, and latitude.Results: In a multivariable model, there was no association between the mean UVI and calcinosis. African American race was associated with a 3-fold greater odds of calcinosis. However, there was a significant statistical interaction between race and mean UVI. Accounting for this interaction, the odds of calcinosis markedly decreased in African American subjects and steadily increased in non-African American subjects over a range of increasing the mean UVI. Higher mean UVI was associated with decreased odds of using biologics or nonmethotrexate disease-modifying antirheumatic drugs and skin ulceration.Conclusion: We described a novel association between UV radiation, calcinosis, and race in a large cohort of patients with juvenile DM. This study furthers our knowledge of the role of UV radiation in the clinical course of juvenile DM and highlights the complex interplay between genes and environment in the clinical phenotypes and development of calcinosis in children with juvenile DM. [ABSTRACT FROM AUTHOR]

Published
2019
Full Text
View/download PDF

18. Baseline Description of the Juvenile Localized Scleroderma Subgroup From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry.

Author

Wu, Eveline Y., Li, Suzanne C., Torok, Kathryn S., Virkud, Yamini V., Fuhlbrigge, Robert C., Rabinovich, C. Egla, Abramson, L., Anderson, E., Andrew, M., Battle, N., Becker, M., Benham, H., Beukelman, T., Birmingham, J., Blier, P., Brown, A., Brunner, H., Cabrera, A., Canter, D., and Carlton, D.

Abstract

Objective: Localized scleroderma (LS) is a chronic inflammatory and fibrosing skin disorder. We present baseline data on the juvenile LS (jLS) cohort from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry, a multicenter observational registry of pediatric rheumatologic disorders. Methods: This is a cross‐sectional analysis of children with jLS enrolled in the CARRA Legacy Registry between May 2010 and April 2014. Descriptive statistics were used for demographic, clinical, and laboratory features. Data analysis included two‐sample t test, χ2 test, Fisher's exact test, linear/logistic regression, and analysis of variance. Results: Of 381 children with jLS, 76% were female and 80% Caucasian. Mean onset age was 8.2 years, with 17% having a 2‐year or greater delay to first pediatric rheumatology (PRH) visit. Linear scleroderma was the most common subtype (54%). Antinuclear antibody (ANA) positivity was associated with joint contracture (P = 0.04), muscle atrophy (P = 0.014), and extremity shortening (P = 0.007). Elevated aldolase was associated with joint contracture (P = 0.008) and elevated creatine kinase (CK) with muscle atrophy (P = 0.028) and extremity shortening (P = 0.016). Children with functional limitation (27%) had earlier first PRH visit compared with those without (P = 0.01). Poorer function correlated with muscle atrophy, joint contracture, and extremity shortening (P < 0.001). Methotrexate (97%) and corticosteroids (68%) were the most common medications used. Conclusion: Children with jLS without joint limitation are referred later, highlighting the insidious onset and need for educating referring providers. Poorer function correlated with muscle atrophy, joint contracture, and limb shortening. ANA positivity and elevated CK or aldolase were associated with muscle atrophy, joint contracture, and/or limb shortening, suggesting predictors of muscle involvement. [ABSTRACT FROM AUTHOR]

Published
2019
Full Text
View/download PDF

19. High Chlamydia Burden Promotes Tumor Necrosis Factor-Dependent Reactive Arthritis in SKG Mice

Author

Baillet, AC, Rehaume, LM, Benham, H, O'Meara, CP, Armitage, CW, Ruscher, R, Brizard, G, Harvie, MCG, Velasco, J, Hansbro, PM, Forrester, JV, Degli-Esposti, MA, Beagley, KW, and Thomas, R

Subjects
Male, Mice, Inbred BALB C, Chlamydia muridarum, Tumor Necrosis Factor-alpha, T-Lymphocytes, Interleukin-17, Mice, Inbred Strains, Vaginosis, Bacterial, Chlamydia Infections, Inflammatory Bowel Diseases, Arthritis, Reactive, Antibodies, Bacterial, T-Lymphocytes, Regulatory, Reproductive Tract Infections, Arthritis & Rheumatology, Mice, Interferon-gamma, 1103 Clinical Sciences, 1107 Immunology, 1117 Public Health and Health Services, Animals, Psoriasis, Female, Respiratory Tract Infections
Abstract

ObjectiveChlamydia trachomatis is a sexually transmitted obligate intracellular pathogen that causes inflammatory reactive arthritis, spondylitis, psoriasiform dermatitis, and conjunctivitis in some individuals after genital infection. The immunologic basis for this inflammatory response in susceptible hosts is poorly understood. As ZAP-70(W163C) -mutant BALB/c (SKG) mice are susceptible to spondylo-arthritis after systemic exposure to microbial β-glucan, we undertook the present study to compare responses to infection with Chlamydia muridarum in SKG mice and BALB/c mice.MethodsAfter genital or respiratory infection with C muridarum, conjunctivitis and arthritis were assessed clinically, and eye, skin, and joint specimens were analyzed histologically. Chlamydial major outer membrane protein antigen-specific responses were assessed in splenocytes. Treg cells were depleted from FoxP3-DTR BALB/c or SKG mice, and chlamydial DNA was quantified by polymerase chain reaction.ResultsFive weeks after vaginal infection with live C muridarum, arthritis, spondylitis, and psoriasiform dermatitis developed in female SKG mice, but not in BALB/c mice. Inflammatory bowel disease did not occur in mice of either strain. The severity of inflammatory disease was correlated with C muridarum inoculum size and vaginal burden postinoculation. Treatment with combination antibiotics starting 1 day postinoculation prevented disease. Chlamydial antigen was present in macrophages and spread from the infection site to lymphoid organs and peripheral tissue. In response to chlamydial antigen, production of interferon-γ and interleukin-17 was impaired in T cells from SKG mice but tumor necrosis factor (TNF) responses were exaggerated, compared to findings in T cells from BALB/c mice. Unlike previous observations in arthritis triggered by β-glucan, no autoantibodies developed. Accelerated disease triggered by depletion of Treg cells was TNF dependent.ConclusionIn the susceptible SKG strain, Chlamydia-induced reactive arthritis develops as a result of deficient intracellular pathogen control, with antigen-specific TNF production upon dissemination of antigen, and TNF-dependent inflammatory disease.

Published
2015

20. ZAP-70 genotype disrupts the relationship between microbiota and host, leading to spondyloarthritis and ileitis in SKG mice

Author

Rehaume LM, Mondot S, Aguirre de Cárcer D, Velasco J, Benham H, Hasnain SZ, Bowman J, Ruutu M, Hansbro PM, McGuckin MA, Morrison M, and Thomas R

Subjects
Mice, Knockout, Mice, Inbred BALB C, ZAP-70 Protein-Tyrosine Kinase, Genotype, Microbiota, Ileitis, Severity of Illness Index, Interleukin-23, Arthritis & Rheumatology, Toll-Like Receptor 4, Mice, 1103 Clinical Sciences, 1107 Immunology, 1117 Public Health and Health Services, Spondylarthritis, Animals, Genetic Predisposition to Disease
Abstract

ObjectiveThe spondyloarthritides share genetic susceptibility, interleukin-23 (IL-23) dependence, and the involvement of microbiota. The aim of the current study was to elucidate how host genetics influence gut microbiota and the relationship between microbiota and organ inflammation in spondyloarthritides.MethodsBALB/c ZAP-70(W163C) -mutant (SKG) mice, Toll-like receptor 4 (TLR-4)-deficient SKG mice, and wild-type BALB/c mice were housed under specific pathogen-free conditions. SKG and wild-type BALB/c mice were maintained under germ-free conditions, and some of these mice were recolonized with altered Schaedler flora. All of the mice were injected intraperitoneally with microbial β-1,3-glucan (curdlan). Arthritis, spondylitis, and ileitis were assessed histologically. Microbiome composition was analyzed in serial fecal samples obtained from mice that were co-housed beginning at the time of weaning, using 454 pyrosequencing. Infiltrating cells and cytokines in the peritoneal cavity were measured by flow cytometry and enzyme-linked immunosorbent assay. Cytokine, endoplasmic reticulum (ER) stress marker, and tight junction protein transcription was measured by quantitative real-time polymerase chain reaction.ResultsMicrobiota content and response to curdlan varied according to whether T cell receptor signal strength was normal or was impaired due to the ZAP-70(W163C) mutation. Curdlan triggered acute inflammation regardless of the presence of the SKG allele or microbiota. However, no or limited microbiota content attenuated the severity of arthritis. In contrast, ileal IL-23 expression, ER stress, lymph node IL-17A production, goblet cell loss, and ileitis development were microbiota-dependent. Ileitis but not arthritis was suppressed by microbiota transfer upon co-housing SKG mice with wild-type BALB/c mice, as well as by TLR-4 deficiency.ConclusionThe interaction between immunogenetic background and host microbiota leads to an IL-23-dependent loss of mucosal function, triggering ileitis in response to curdlan.

Published
2014

22. Clinical Characteristics and Factors Associated With Disability and Impaired Quality of Life in Children With Juvenile Systemic Sclerosis: Results From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry.

Author

Stevens, Brandi E., Torok, Kathryn S., Li, Suzanne C., Hershey, Nicole, Curran, Megan, Higgins, Gloria C., Moore, Katharine F., Egla Rabinovich, C., Dodson, Samuel, Stevens, Anne M., Abramson, L, Anderson, E., Andrew, M., Battle, N., Becker, M., Benham, H., Beukelman, T., Birmingham, J., Blier, P., and Brown, A.

Abstract

Objective: To investigate clinical manifestations of juvenile systemic sclerosis (SSc; scleroderma), including disease characteristics and patient quality of life, using the multinational Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry.Methods: Patients with juvenile SSc were prospectively enrolled between 2010 and 2013. The diagnosis of juvenile SSc was determined by the enrolling pediatric rheumatologist, with the requirement for disease onset prior to age 18 years. Collected data included demographics, disease characteristics, medication exposure, and quality of life metrics.Results: In total, 64 patients with juvenile SSc were enrolled a median of 3.6 years after disease onset, which occurred at a median age of 10.3 years. The most common organ manifestations were dermatologic and vascular, followed by musculoskeletal, gastrointestinal, and pulmonary; in 38% of patients, ≥4 organ systems were affected. Patients with juvenile SSc had significantly more disability at enrollment compared with CARRA Legacy Registry patients with juvenile idiopathic arthritis, dermatomyositis, or systemic lupus erythematosus. Although physician-reported measures correlated most closely with arthritis, dermatologic manifestations, and pulmonary manifestations, poor patient-reported measures were associated with gastrointestinal involvement. During >50 person-years of follow-up, most organ manifestations remained stable, and no mortality or development of new solid organ involvement after enrollment was reported.Conclusion: In the first multicenter prospective cohort of patients with juvenile SSc in North America, the disease burden was high: multiorgan manifestations were common, and functional disability was greater than that observed in patients with other childhood-onset rheumatic diseases. Gastrointestinal involvement had the greatest impact on quality of life. [ABSTRACT FROM AUTHOR]

Published
2018
Full Text
View/download PDF

24. Delays to Care in Pediatric Lupus Patients: Data From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry

Author

Rubinstein, Tamar B., Mowrey, Wenzhu B., Ilowite, Norman T., Wahezi, Dawn M., Abramson, L., Anderson, E., Andrew, M., Battle, N., Becker, M., Benham, H., Beukelman, T., Birmingham, J., Blier, P., Brown, A., Brunner, H., Cabrera, A., Canter, D., Carlton, D., Caruso, B., Ceracchio, L., Chalom, E., Chang, J., Charpentier, P., Clark, K., Dean, J., Dedeoglu, F., Feldman, B., Ferguson, P., Fox, M., Francis, K., Gervasini, M., Goldsmith, D., Gorton, G., Gottlieb, B., Graham, T., Griffin, T., Grosbein, H., Guppy, S., Haftel, H., Helfrich, D., Higgins, G., Hillard, A., Hollister, J.R., Hsu, J., Hudgins, A., Hung, C., Huttenlocher, A., Imlay, A., Imundo, L., Inman, C.J., Jaqith, J., Jerath, R., Jung, L., Kahn, P., Kapedani, A., Kingsbury, D., Klein, K., Klein‐Gitelman, M., Kunkel, A., Lapidus, S., Layburn, S., Lehman, T., Lindsley, C., Macgregor‐Hannah, M., Malloy, M., Mawhorter, C., McCurdy, D., Mims, K., Moorthy, N., Morus, D., Muscal, E., Natter, M., Olson, J., O'Neil, K., Onel, K., Orlando, M., Palmquist, J., Phillips, M., Ponder, L., Prahalad, S., Punaro, M., Puplava, D., Quinn, S., Quintero, A., Rabinovich, C., Reed, A., Reed, C., Ringold, S., Riordan, M., Roberson, S., Robinson, A., Rossette, J., Rothman, D., Russo, D., Ruth, N., Schikler, K., Sestak, A., Shaham, B., Sherman, Y., Simmons, M., Singer, N., Spalding, S., Stapp, H., Syed, R., Thomas, E., Torok, K., Trejo, D., Tress, J., Upton, W., Vehe, R., Scheven, E., Walters, L., Weiss, J., Weiss, P., Welnick, N., White, A., Woo, J., Wootton, J., Yalcindag, A., Zapp, C., Zemel, L., and Zhu, A.

Abstract

Prompt treatment for lupus is important to prevent morbidity. A potential barrier to early treatment of pediatric lupus is delayed presentation to a pediatric rheumatologist. To better understand factors contributing to delayed presentation among pediatric lupus patients, we examined differences in demographic and clinical characteristics of lupus patients within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry with regard to time between symptom onset and presentation to a pediatric rheumatologist. We analyzed data from 598 CARRALegacy Registry participants for differences between those who presented early (within <1 month of symptom onset), between 1–3 months (typical presentation), with moderate delays (3–12 months), and with severe delays (≥1 year). Factors associated with early presentation, moderate delay, and severe delay were determined by multinomial logistic regression. Forty‐four percent of patients presented early, while 23% had moderate delays and 9% had severe delays. Family history of lupus, absence of discoid rash, and location in a state with a higher density of pediatric rheumatologists were associated with earlier presentation. Younger age, low household income (<$25,000 per year), and a family history of lupus were associated with severe delay. Delays to care ≥1 year exist in a notable minority of pediatric lupus patients from the CARRALegacy Registry. In this large and diverse sample of patients, access to care and family resources played an important role in predicting time to presentation to a pediatric rheumatologist.

Published
2018
Full Text
View/download PDF

34. Pain, functional disability, and their Association in Juvenile Fibromyalgia Compared to other pediatric rheumatic diseases.

Author

Connelly, Mark, Weiss, Jenifer E., for the CARRA Registry Investigators, Abramson, L., Anderson, E., Andrew, M., Battle, N., Becker, M., Benham, H., Beukelman, T., Birmingham, J., Blier, P., Brown, A., Brunner, H., Cabrera, A., Canter, D., Carlton, D., Caruso, B., Ceracchio, L., and Chalom, E.

Subjects
RHEUMATISM, FIBROMYALGIA, JUVENILE idiopathic arthritis, CONNECTIVE tissue diseases, JUVENILE diseases, DISABILITIES, DERMATOMYOSITIS
Abstract

Background: Severe pain and impairments in functioning are commonly reported for youth with juvenile fibromyalgia. The prevalence and impact of pain in other diseases commonly managed in pediatric rheumatology comparatively have been rarely systematically studied. The objective of the current study was to determine the extent to which high levels of pain and functional limitations, and the strength of their association, are unique to youth with juvenile primary fibromyalgia syndrome/JPFS) relative to other pediatric rheumatic diseases. Methods: Using data from 7753 patients enrolled in the multinational Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry, we compared the levels and association of pain and functional limitations between youth with JPFS and those with other rheumatic diseases. Results: Pain levels were rated highest among youth with JPFS (M = 6.4/10, SD = 2.4) and lowest for juvenile dermatomyositis (M = 1.7/10, SD = 2.2), with pain significantly higher in the JPFS group than any other pediatric rheumatic disease (effect sizes =.22 to 1.05). Ratings on measures of functioning and well-being also were significantly worse for patients with JPFS than patients with any other rheumatic disease (effect sizes =.62 to 1.06). The magnitude of association between pain intensity and functional disability, however, generally was higher in other rheumatic diseases than in JPFS. Pain was most strongly associated with functional limitations in juvenile dermatomyositis, juvenile idiopathic arthritis, and mixed connective tissue disease. Conclusions: JPFS is unique among conditions seen in pediatric rheumatology with regard to ratings of pain and disability. However, pain appears to be comparably or more highly associated with level of functional impairment in other pediatric rheumatic diseases. Pain in childhood rheumatic disease thus would benefit from increased prioritization for research and treatment. [ABSTRACT FROM AUTHOR]

Published
2019
Full Text
View/download PDF

43. REMOVAL.

Author

BENHAM, H. L.

Published
1869

44. UNTITLED.

Author

BENHAM, H. L.

Published
1869

49. Needs Assessment of Musculoskeletal Ultrasound Training in North American Pediatric Rheumatology Fellowship Programs.

Author

Perron MM, Ziniel SI, Curran M, Bloom JL, Vega-Fernandez P, Benham H, Torralba K, De Ranieri D, and Lin C

Subjects
Humans, Curriculum, Pediatrics education, Education, Medical, Graduate, North America, Male, Female, Adult, Rheumatology education, Ultrasonography, Needs Assessment, Fellowships and Scholarships
Abstract

Objective: Musculoskeletal ultrasound (MSUS) is widely used in adult rheumatology practice for diagnosis of arthritis and procedural guidance; however, it is not yet common practice in pediatric rheumatology. MSUS is advantageous to the pediatric population because it lacks radiation and eliminates need for sedation. This study aims to assess interest in, access to, and barriers to MSUS training in pediatric rheumatology fellowship programs in North America., Methods: A survey was developed by pediatric rheumatology providers with experience in medical and/or MSUS education and distributed via REDCap anonymously in March 2022 (Supplementary Material). Eligible participants included current and recently graduated (<1 year) pediatric rheumatology fellows at a North American program. Descriptive statistics and bivariate analyses using design-based Pearson chi-squared tests were performed., Results: Overall response rate was 78% (88/113), and 75% reported some form of MSUS training during fellowship. Only 36% indicated their program had a formal MSUS curriculum. Of those with MSUS training, 23% reported adult-only MSUS education. Eighty-four percent felt MSUS would be beneficial to their career. Major barriers to MSUS training included lack of MSUS-trained faculty, lack of time, and lack of hands-on MSUS sessions. Those who had access to MSUS training were significantly more interested in MSUS than those without (P = 0.0036)., Conclusion: This study demonstrates that North American pediatric rheumatology fellows have a strong interest in learning MSUS, but they face significant challenges in accessing MSUS training (lack of MSUS-trained faculty, time, and access to hands-on training). MSUS should be incorporated into fellowship curriculum; however, implementation remains a challenge., (© 2024 American College of Rheumatology.)

Published
2024
Full Text
View/download PDF

50. Rheumatology specialist care delivered at the Southern QLD Centre of Excellence in Aboriginal and Torres Strait Islander Primary Health Care.

Author

Grosman S, Tesiram J, Hayman N, and Benham H

Subjects
Humans, Australia, Australian Aboriginal and Torres Strait Islander Peoples, Retrospective Studies, Primary Health Care, Rheumatology, Health Services, Indigenous, Arthritis, Rheumatoid, Antirheumatic Agents
Abstract

Background: There is limited literature on the prevalence of rheumatologic conditions in Australian First Nations people. Existing evidence suggests a high disease burden with poorer outcomes. In 2016 a rheumatology clinic was established at The Southern Queensland Centre of Excellence in Aboriginal and Torres Strait Islander Primary Health Care (CoE)., Aims: To improve knowledge of rheumatic diseases presentations in an urban First Nations cohort and to assess the effectiveness of the CoE clinic., Methods: Data on attendance, diagnosis, treatment and demographics were obtained retrospectively from clinical records at the CoE from 2016 to 2020. Administrative attendance data for the largest public general rheumatology clinic in the region for the 4 years preceding the establishment of the CoE clinic were used as a historic cohort control., Results: A cohort of 93 patients was seen at the CoE with 439 appointments compared to 207 in the historical control. Common diagnoses were osteoarthritis (24%), seropositive rheumatoid arthritis (17%), gout (13%) and spondyloarthropathies (10%). Forty per cent of the cohort at CoE were treated with at least one disease-modifying antirheumatic drug (DMARD) and 12% with a biologic or targeted synthetic DMARD. Seventy-five per cent of appointments were attended versus 71% in control group. Adjusted odds ratio of attendance was 1.35 (P = 0.07)., Conclusions: Provision of rheumatology specialty care in an urban primary health setting aimed specifically at the needs of First Nations people led to increased uptake and engagement. A broad range of rheumatologic diagnoses was made and significant DMARD treatments commenced., (© 2023 Royal Australasian College of Physicians.)

Published
2024
Full Text
View/download PDF

Catalog

Books, media, physical & digital resources
See catalog results