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2. The Hemophilia Joint Health Score version 2.1 Validation in Adult Patients Study: A multicenter international study

Author

St‐Louis, Jean, Abad, Audrey, Funk, Sharon, Tilak, Merlyn, Classey, Stephen, Zourikian, Nichan, McLaughlin, Paul, Lobet, Sébastien, Hernandez, Grace, Akins, Stacie, Wells, Anna J., Manco‐Johnson, Marilyn, John, Judy, Austin, Steve, Chowdary, Pratima, Hermans, Cedric, Nugent, Diane, Bakeer, Nihal, Mangles, Sarah, Hilliard, Pamela, Blanchette, Victor S., and Feldman, Brian M.

Published
2022
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3. Musculoskeletal ultrasound in hemophilia: Results and recommendations from a global survey and consensus meeting

Author

Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M., von Drygalski, Annette, Doria, Andrea S., Ignas, Danial M., Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y., Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N., Kruse‐Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco‐Johnson, Marilyn, Martinoli, Carlo, O’Donnell, James S., Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N., Vidarsson, Logi, and Blanchette, Victor S.

Published
2021
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6. The Hemophilia Joint Health Score version 2.1 Validation in Adult Patients Study: A multicenter international study

Author

UCL - SSS/IREC/NMSK - Neuro-musculo-skeletal Lab, UCL - (SLuc) Service d'hématologie, St‐Louis, Jean, Abad, Audrey, Funk, Sharon, Tilak, Merlyn, Classey, Stephen, Zourikian, Nichan, McLaughlin, Paul, Lobet, Sébastien, Hernandez, Grace, Akins, Stacie, Wells, Anna J., Manco‐Johnson, Marilyn, John, Judy, Austin, Steve, Chowdary, Pratima, Hermans, Cédric, Nugent, Diane, Bakeer, Nihal, Mangles, Sarah, Hilliard, Pamela, Blanchette, Victor S., Feldman, Brian M., UCL - SSS/IREC/NMSK - Neuro-musculo-skeletal Lab, UCL - (SLuc) Service d'hématologie, St‐Louis, Jean, Abad, Audrey, Funk, Sharon, Tilak, Merlyn, Classey, Stephen, Zourikian, Nichan, McLaughlin, Paul, Lobet, Sébastien, Hernandez, Grace, Akins, Stacie, Wells, Anna J., Manco‐Johnson, Marilyn, John, Judy, Austin, Steve, Chowdary, Pratima, Hermans, Cédric, Nugent, Diane, Bakeer, Nihal, Mangles, Sarah, Hilliard, Pamela, Blanchette, Victor S., and Feldman, Brian M.

Published
2022

8. Musculoskeletal ultrasound in hemophilia: Results and recommendations from a global survey and consensus meeting.

Author

UCL - SSS/IREC/SLUC - Pôle St.-Luc, UCL - (SLuc) Service d'hématologie, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M, von Drygalski, Annette, Doria, Andrea S, Ignas, Danial M, Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y, Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N, Kruse-Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco-Johnson, Marilyn, Martinoli, Carlo, O'Donnell, James S, Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N, Vidarsson, Logi, Blanchette, Victor S, UCL - SSS/IREC/SLUC - Pôle St.-Luc, UCL - (SLuc) Service d'hématologie, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M, von Drygalski, Annette, Doria, Andrea S, Ignas, Danial M, Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y, Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N, Kruse-Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco-Johnson, Marilyn, Martinoli, Carlo, O'Donnell, James S, Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N, Vidarsson, Logi, and Blanchette, Victor S

Abstract

For persons with hemophilia, optimization of joint outcomes is an important unmet need. The aim of this initiative was to determine use of ultrasound in evaluating arthropathy in persons with hemophilia, and to move toward consensus among hemophilia care providers regarding the preferred ultrasound protocols for global adaptation. A global survey of hemophilia treatment centers was conducted that focused on understanding how and why ultrasound was being used and endeavored to move toward consensus definitions of both point-of-care musculoskeletal ultrasound (POC-MSKUS) and full diagnostic ultrasound, terminology to describe structures being assessed by ultrasound, and how these assessments should be interpreted. Next, an in-person meeting of an international group of hemophilia health care professionals and patient representatives was held, with the objective of achieving consensus regarding the acquisition and interpretation of POC-MSKUS and full diagnostic ultrasound for use in the assessment of musculoskeletal (MSK) pathologies in persons with hemophilia. The recommendations were that clear definitions of the types of ultrasound examinations should be adopted and that a standardized ultrasound scoring/measurement system should be developed, tested, and implemented. The scoring/measurement system should be tiered to allow for a range of complexity yet maintain the ability for comparison across levels. Ultrasound is an evolving technology increasingly used for the assessment of MSK outcomes in persons with hemophilia. As adoption increases globally for clinical care and research, it will become increasingly important to establish clear guidelines for image acquisition, interpretation, and reporting to ensure accuracy, consistency, and comparability across groups.

Published
2021

9. Musculoskeletal ultrasound in hemophilia: Results and recommendations from a global survey and consensus meeting

Author

Child Health, Poli Van Creveldkliniek Medisch, Circulatory Health, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M, von Drygalski, Annette, Doria, Andrea S, Ignas, Danial M, Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y, Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N, Kruse-Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco-Johnson, Marilyn, Martinoli, Carlo, O'Donnell, James S, Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N, Vidarsson, Logi, Blanchette, Victor S, Child Health, Poli Van Creveldkliniek Medisch, Circulatory Health, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M, von Drygalski, Annette, Doria, Andrea S, Ignas, Danial M, Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y, Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N, Kruse-Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco-Johnson, Marilyn, Martinoli, Carlo, O'Donnell, James S, Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N, Vidarsson, Logi, and Blanchette, Victor S

Published
2021

10. Improvements in Communication and Coordination of Care in a Hemophilia Treatment Center

Author

Ng, Christopher J., primary, Spomer, Nancy, additional, Shearer, Rick, additional, LeBlanc, Audra, additional, Funk, Sharon, additional, Manco-Johnson, Marilyn, additional, Branchford, Brian, additional, Warren, Beth, additional, Buckner, Tyler W., additional, Cowell, Amy, additional, Moyer, Genevieve, additional, Wang, Michael, additional, Gibson, Elizabeth, additional, and Mashburn, Christine, additional

Published
2021
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11. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia

Author

Manco-Johnson, Marilyn J., Abshire, Thomas C., Riske, Brenda, Shapiro, Amy D., Kilcoyne, Ray, Ingram, J. David, Hacker, Michele R., Manco-Johnson, Michael L., Funk, Sharon, Jacobson, Linda, Valentino, Leonard A., Hoots, W. Keith, Buchanan, George R., Recht, Michael, Matsunaga, Alison, Mathew, Prasad, DiMichele, Donnam, Medeiros, Desiree, Nugent, Diane, Thompson, Alexis A., Thomas, Gregory A., McRedmond, Kevin, Soucie, J. Michael, Austin, Harlan, and Evatt, Bruce L.

Subjects
Hemophilia -- Complications and side effects, Joint diseases -- Prevention, Joint diseases -- Care and treatment
Abstract

Effective ways to prevent arthropathy in boys with severe hemophilia A are examined. It is shown that prophylaxis with recombinant factor VIII can prevent joint damage and decrease the frequency of joint and other hemorrhages in young boys with severe hemophilia A.

Published
2007

12. Musculoskeletal ultrasound in hemophilia: Results and recommendations from a global survey and consensus meeting

Author

UCL - (SLuc) Service d'hématologie, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M., Drygalski, Annette, Doria, Andrea S., Ignas, Danial M., Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y., Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N., Kruse‐Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco‐Johnson, Marilyn, Martinoli, Carlo, O’Donnell, James S., Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N., Vidarsson, Logi, Blanchette, Victor S., UCL - (SLuc) Service d'hématologie, Bakeer, Nihal, Dover, Saunya, Babyn, Paul, Feldman, Brian M., Drygalski, Annette, Doria, Andrea S., Ignas, Danial M., Abad, Audrey, Bailey, Cindy, Beggs, Ian, Chang, Eric Y., Dunn, Amy, Funk, Sharon, Gibikote, Sridhar, Goddard, Nicholas, Hilliard, Pamela, Keshava, Shyamkumar N., Kruse‐Jarres, Rebecca, Li, Yingjia, Lobet, Sébastien, Manco‐Johnson, Marilyn, Martinoli, Carlo, O’Donnell, James S., Papakonstantinou, Olympia, Pergantou, Helen, Poonnoose, Pradeep, Querol, Felipe, Srivastava, Alok, Steiner, Bruno, Strike, Karen, Timmer, Merel, Tyrrell, Pascal N., Vidarsson, Logi, and Blanchette, Victor S.

Published
2020

13. Evaluating international Haemophilia Joint Health Score (HJHS) results combined with expert opinion: Options for a shorter HJHS

Author

Poli Van Creveldkliniek Medisch, Child Health, KGW-algemeen, Kinderbewegingszorg patientenzorg, Circulatory Health, Kuijlaars, Isolde A R, van der Net, Janjaap, Feldman, Brian M, Aspdahl, Magnus, Bladen, Melanie, de Boer, Wypke, Cuesta-Barriuso, Rubén, Matlary, Ruth E D, Funk, Sharon M, Hilliard, Pamela, John, Judy A, Kempton, Christine L, de Kleijn, Piet, Manco-Johnson, Marilyn, Petrini, Pia, Poonnoose, Pradeep, St-Louis, Jean, Thomas, Sylvia, Timmer, Merel A, Trakymiene, Sonata Saulyte, van Vlimmeren, Leo, Fischer, Kathelijn, Poli Van Creveldkliniek Medisch, Child Health, KGW-algemeen, Kinderbewegingszorg patientenzorg, Circulatory Health, Kuijlaars, Isolde A R, van der Net, Janjaap, Feldman, Brian M, Aspdahl, Magnus, Bladen, Melanie, de Boer, Wypke, Cuesta-Barriuso, Rubén, Matlary, Ruth E D, Funk, Sharon M, Hilliard, Pamela, John, Judy A, Kempton, Christine L, de Kleijn, Piet, Manco-Johnson, Marilyn, Petrini, Pia, Poonnoose, Pradeep, St-Louis, Jean, Thomas, Sylvia, Timmer, Merel A, Trakymiene, Sonata Saulyte, van Vlimmeren, Leo, and Fischer, Kathelijn

Published
2020

15. Evaluating international Haemophilia Joint Health Score (HJHS) results combined with expert opinion: Options for a shorter HJHS

Author

Kuijlaars, Isolde A.R., primary, Net, Janjaap, additional, Feldman, Brian M., additional, Aspdahl, Magnus, additional, Bladen, Melanie, additional, Boer, Wypke, additional, Cuesta‐Barriuso, Rubén, additional, Matlary, Ruth E.D., additional, Funk, Sharon M., additional, Hilliard, Pamela, additional, John, Judy A., additional, Kempton, Christine L., additional, Kleijn, Piet, additional, Manco‐Johnson, Marilyn, additional, Petrini, Pia, additional, Poonnoose, Pradeep, additional, St‐Louis, Jean, additional, Thomas, Sylvia, additional, Timmer, Merel A., additional, Trakymiene, Sonata Saulyte, additional, Vlimmeren, Leo, additional, and Fischer, Kathelijn, additional

Published
2020
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17. Young adult outcomes of childhood prophylaxis for severe hemophilia A: results of the Joint Outcome Continuation Study

Author

Warren, Beth Boulden, primary, Thornhill, Dianne, primary, Stein, Jill, primary, Fadell, Michael, primary, Ingram, J. David, primary, Funk, Sharon, primary, Norton, Kristi L., primary, Lane, Heidi D., primary, Bennett, Carolyn M., primary, Dunn, Amy, primary, Recht, Michael, primary, Shapiro, Amy, primary, and Manco-Johnson, Marilyn J., primary

Published
2020
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19. Factor VIII prophylaxis effects outweigh other hemostasis contributors in predicting severe haemophilia A joint outcomes.

Author

Warren, Beth Boulden, Jacobson, Linda, Kempton, Christine, Buchanan, George R., Recht, Michael, Brown, Deborah, Leissinger, Cindy, Shapiro, Amy D., Abshire, Thomas C., Manco‐Johnson, Marilyn J., Riske, Brenda, Hacker, Michele R., Kilcoyne, Ray, Ingram, J. David, Manco‐Johnson, Michael L., Funk, Sharon, Valentino, Leonard A., Hoots, W Keith, DiMichele, Donna, and Bleak, Shirley

Subjects
LOGISTIC regression analysis, BLOOD coagulation factors, RANK correlation (Statistics)
Abstract

Introduction: The Joint Outcome Study (JOS) demonstrated that previously untreated children with severe haemophilia A treated with prophylactic factor VIII (FVIII) concentrate had superior joint outcomes at age 6 years compared to those children treated episodically for bleeding. However, variation in joint outcome within each treatment arm was not well explained. Aim: In this study, we sought to better understand variation in joint outcomes at age 6 years in participants of the JOS. Methods: We evaluated the influence of FVIII half‐life, treatment adherence, constitutional coagulant and anticoagulant proteins, and global assays on joint outcomes (number of joint bleeds, total number of bleeds, total MRI score and joint physical exam score). Logistic regression was used to evaluate the association of variables with joint failure status on MRI, defined as presence of subchondral cyst, surface erosion or joint‐space narrowing. Each parameter was also correlated with each joint outcome using Spearman correlations. Results: Prophylaxis treatment arm and FVIII trough were each found to reduce risk of joint failure on univariate logistic regression analysis. When controlling for treatment arm, FVIII trough was no longer significant, likely because of the high level of covariation between these variables. We found no consistent correlation between any laboratory assay performed and any joint outcome parameter measured. Conclusion: In the JOS, the effect of prescribed prophylactic FVIII infusions on joint outcome overshadowed the contribution of treatment adherence, FVIII half‐life, global assays of coagulation and constitutional coagulation proteins. (ClinicalTrials.gov number, NCT00207597). [ABSTRACT FROM AUTHOR]

Published
2019
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21. Long-Term Orthopedic Effects Of Delaying Prophylaxis In Severe Hemophilia A Until Age 6 Years: Results Of The Joint Outcome Study Continuation (JOSc)

Author

Manco-Johnson, Marilyn J., primary, Manco-Johnson, Michael L, additional, Blades, Taylor A, additional, Funk, Sharon, additional, Lane, Heidi, additional, McRedmond, Kevin, additional, Dunn, Amy L., additional, Recht, Michael, additional, Shapiro, Amy D., additional, Valentino, Leonard A., additional, and Brown, Deborah, additional

Published
2013
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22. Validation of a new pediatric joint scoring system from the International Hemophilia Prophylaxis Study Group: Validity of the hemophilia joint health score

Author

Feldman, Brian M., primary, Funk, Sharon M., additional, Bergstrom, Britt‐Marie, additional, Zourikian, Nichan, additional, Hilliard, Pamela, additional, van der Net, Janjaap, additional, Engelbert, Raoul, additional, Petrini, Pia, additional, van den Berg, H. Marijke, additional, Manco‐Johnson, Marilyn J., additional, Rivard, Georges E., additional, Abad, Audrey, additional, and Blanchette, Victor S., additional

Published
2011
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23. 32P Radiosynoviorthesis in Children With Hemophilia

Author

Manco-Johnson, Marilyn J., primary, Nuss, Rachelle, additional, Lear, James, additional, Wiedel, Jerome, additional, Geraghty, Susan J., additional, Hacker, Michele R., additional, Funk, Sharon, additional, Kilcoyne, Ray F., additional, and Murphy, James, additional

Published
2002
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