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1. Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure

Author

Robson JC, Dawson J, Cronholm PF, Milman N, Kellom KS, Ashdown S, Easley E, Farrar JT, Gebhart D, Lanier G, McAlear CA, Peck J, Luqmani RA, Shea JA, Tomasson G, and Merkel PA

Subjects
ANCA-associated vasculitis Quality of Life Patient reported outcomes Granulomatosis with polyangiitis Microscopic polyangiitis Eosinophilic granulomatosis with polyangiiitis, Medicine (General), R5-920
Abstract

Joanna C Robson,1,2 Jill Dawson,3 Peter F Cronholm,4 Nataliya Milman,5 Katherine S Kellom,6 Susan Ashdown,7 Ebony Easley,8 John T Farrar,9 Don Gebhart,10,11 Georgia Lanier,10,11 Carol A McAlear,12 Jacqueline Peck,7 Raashid A Luqmani,7 Judy A Shea,13 Gunnar Tomasson,14 Peter A Merkel10,11 1Department of Rheumatology, Faculty of Health and Applied Sciences, University of the West of England, Bristol, UK; 2School of Clinical Sciences, University of Bristol, Bristol, UK; 3Department of Population Health (HSRU), University of Oxford, Oxford, UK; 4Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, PA, USA; 5Division of Rheumatology, Department of Medicine, University of Ottawa, Ottawa Hospital Research Institute, Ottawa, ON, Canada; 6PolicyLab, Children’s Hospital of Philadelphia, Philadelphia, PA, USA; 7Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; 8Department of Family Medicine and Community Health, Mixed Methods Research Laboratory, University of Pennsylvania, Philadelphia, PA, USA; 9Biostatistics and Epidemiology, Hospital of the University of Pennsylvania, Philadelphia, PA, USA; 10Division of Rheumatology, Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA; 11Department of Biostatistics and Clinical Epidemiology, University of Pennsylvania, Philadelphia, PA, USA; 12Vasculitis Research, University of Pennsylvania, Philadelphia, PA, USA; 13School of Medicine, University of Pennsylvania, Philadelphia, PA, USA; 14Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland Objective: The antineutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An international collaboration was created to investigate the impact of AAV on health-related quality of life (HRQoL), and develop a disease-specific patient-reported outcome measure to assess outcomes of importance to patients.Methods: Patients with AAV from the UK, USA, and Canada were interviewed to identify salient aspects of HRQoL affected by AAV. The study was overseen by a steering committee including four patient research partners. Purposive sampling of interviewees ensured representation of a range of disease manifestations and demographics. Inductive analysis was used to identify themes of importance to patients; these were further confirmed by a free-listing exercise in the US. Individual themes were recast into candidate items, which were scrutinized by patients, piloted through cognitive interviews and received a linguistic and translatability evaluation.Results: Fifty interviews, conducted to saturation, with patients from the UK, USA, and Canada, identified 55 individual themes of interest within seven broad domains: general health perceptions, impact on function, psychological perceptions, social perceptions, social contact, social role, and symptoms. Individual themes were constructed into >100 candidate questionnaire items, which were then reduced and refined to 35 candidate items.Conclusion: This is the largest international qualitative analysis of HRQoL in AAV to date, and the results have underpinned the development of 35 candidate items for a disease-specific, patient-reported outcome questionnaire. Keywords: ANCA-associated vasculitis, quality of life, patient-reported outcomes, granulomatosis with polyangiitis, microscopic polyangiitis, eosinophilic granulomatosis with polyangiitis

Published
2018

2. Variations in the clinical practice of physicians managing Takayasu arteritis: a nationwide survey

Author

Barra L, Liang P, Benseler SM, Cabral DA, Fifi-Mah A, Li Y, Milman N, Twilt M, Yacyshyn E, and Pagnoux C

Subjects
Takayasu Arteritis, physician practice patterns, practice guidelines, Diseases of the musculoskeletal system, RC925-935
Abstract

Lillian Barra,1 Patrick Liang,2 Susanne M Benseler,3 David A Cabral,4 Aurore Fifi-Mah,5 Yueyang Li,1 Nataliya Milman,6 Marinka Twilt,3 Elaine Yacyshyn,7 Christian Pagnoux8 1Division of Rheumatology, The University of Western Ontario, St Joseph’s Health Care, London, Ontario, 2Division of Rheumatology, Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Quebec, 3Division of Rheumatology, Department of Paediatrics, Alberta Children’s Hospital, University of Calgary, Calgary, Alberta, 4Division of Rheumatology, BC Children’s Hospital, Vancouver, British Columbia, 5Division of Rheumatology, South Health Campus, University of Calgary, Calgary, Alberta, 6Division of Rheumatology, Department of Medicine, University of Ottawa, Ottawa, 7Division of Rheumatology, University of Alberta, Edmonton, Alberta, 8Department of Rheumatology, Mount Sinai Hospital, Toronto, University of Toronto, Ontario, Canada Objective: Takayasu arteritis (TAK) is a large vessel vasculitis that predominately affects young women and can cause severe ischemic complications. Given the rarity of TAK, the management of this condition is challenging. We aim to describe current rheumatologist practices for the management of TAK and identify discrepancies and gaps in knowledge. Methods: An online survey (developed by the Canadian Vasculitis Network and approved by the Canadian Rheumatology Association) containing 48 questions with regard to the diagnosis, monitoring and treatment of TAK was distributed to 495 Canadian adult and pediatric rheumatologists by email. Results: Sixty-six rheumatologists completed the survey (13% response rate): the majority (73%) were from academic centers and ≤25% reported managing more than ten patients in their career. For establishing the diagnosis of TAK, they relied on a combination of signs and symptoms of ischemia, elevations of inflammatory markers and vascular imaging (typically computed tomography and magnetic resonance angiography). The frequency of monitoring for disease activity and the methods employed (clinical, laboratory or imaging) were variable. All physicians used corticosteroids for the treatment of TAK, but 42% would treat for at least 6–12 months, 26% for 12–24 months and 23% would never stop corticosteroids. Fifty-three percent would always use an immunosuppressant (most commonly methotrexate or azathioprine) in addition to corticosteroids and the remainder would only start an immunosuppressant in patients with refractory or relapsing disease. Conclusion: Physician practices for the management of TAK are variable, suggesting that there are knowledge gaps, which may impact outcomes in patients with TAK. Keywords: Takayasu arteritis, physician practice patterns, practice guidelines, large vessel vasculitis, aortitis

Published
2017

3. AB0796 CANVASC CONSENSUS RECOMMENDATIONS FOR THE USE OF AVACOPAN IN ANTINEUTROPHIL CYTOPLASM ANTIBODY-ASSOCIATED VASCULITIS: 2022 ADDENDUM

Author

Turgeon, D., primary, Bakowsky, V., additional, Baldwin, C., additional, Cabral, D., additional, Clements-Baker, M., additional, Clifford, A., additional, Cohen Tervaert, J. W., additional, Dehghan, N., additional, Ennis, D., additional, Famorca, L., additional, Fifi-Mah, A., additional, Girard, L. P., additional, Lefebvre, F., additional, Liang, P., additional, Makhzoum, J. P., additional, Massicotte-Azarniouch, D., additional, Mendel, A., additional, Milman, N., additional, Reich, H., additional, Robinson, D., additional, Ross, C., additional, Rumsey, D. G., additional, Soowamber, M., additional, Towheed, T., additional, Trudeau, J., additional, Twilt, M., additional, Yacyshyn, E., additional, Yardimci, G., additional, Barra, L., additional, and Pagnoux, C., additional

Published
2023
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6. Association between age at disease onset of anti-neutrophil cytoplasmic antibody-associated vasculitis and clinical presentation and short-term outcomes

Author

Monti, S., Craven, A., Klersy, C., Montecucco, C., Caporali, R., Watts, R., Merkel, P. A., Luqmani, R., Achilleos, K., Adler, M., Alba, M. A., Albert, D. A., Alibaz-Oner, F., Allcoat, P., Amano, K., Amarasuriya, M., Amudala, N. A., Andrews, J., Archer, A. M., Arimura, Y., Atukorala, I., Azevedo, E., Bajad, S., Baldwin, C., Barra, L. J., Baslund, B., Basu, N., Baykal, M., Berger, C., Berglin, E., Besada, E., Bhardwaj, M., Bischof, A., Blockmans, D., Blood, J., Draibe, J. B., Brand, S., Brandao, M., Bruce, I. N., Butler, A., Calabrese, L. H., Ferrer, D. C., Carette, S., Carmona, D., Ceunen, H., Chakravarty, K., Chapman, P. T., Chocova, Z., Chung, S. A., Ci, W., Cid, M. C., Clark, T. M., Clarkson, M. R., De Jesus Contreras-Rodriguez, F., Conway, R., Cooke, K., Viros, X. C., Cordeiro, A., Costa, A., Culfear, K., Daikeler, T., Danda, D., Das, S. K., Dasgupta, B., De Castro, A. M., Dehghan, N., Devassy, R., Dhindsa, N., Diamantopoulos, A. P., Direskeneli, H., Dobashi, H., Juan, D., Durrani, M., Edelsten, C., Eifert, J., Elhayek, S., Elsideeg, S., Endo, T., Erden, A., Erer, B., Eriksson, P., Erturk, Z., Espigol-Frigole, G., Felicetti, M., Ferraro, A., Ferro, J. M., Fifi-Mah, A., Flores-Suarez, L. F., Flossmann, O., Flynn, D., Fonseca, J. E., Foot, J., Foote, M., Forbess, L., Fujimoto, S., Fukuoka, K., Furtado, C., Furuta, S., Gaffo, A. L., Gallagher, P., Gao, N., Gatenby, P., Gendi, N., Geraldes, R., Gerits, A., Gioffredi, A., Gomples, L., Goncalves, M. J., Gondo, P., Graham, A., Grainger, R., Gray, D. T., Grayson, P. C., Griffiths, L., Guo, Y., Gupta, R., Gylling, M., Hajj-Ali, R. A., Hammam, N., Harigai, M., Hartley, L., Haslett, J., Hassan, A., Hatemi, G., Hellmich, B., Henckaerts, L., Henes, J. C., Hepburn, J., Herd, V., Hess, C., Hill, C., Hinojosa-Azaola, A., Hirahashi, J., Hirano, F., Hocevar, A., Holle, J., Hollinger, N., Homma, S., Howard, T., Hoyles, R. K., Hruskova, Z., Hutcheon, G., Ignacak, M., Igney-Oertel, A., Ikeda, K., Ikegaya, N., Jagadeesh, S., Jaquith, J., Jayne, D. R. W., Jewell, T., Jones, C., Joshi, A., Kalyoncu, U., Kamall, S., Kamath, S., Lai, K. S., Kaname, S., Kanchinadham, S., Karadag, O., Karube, M., Kaszuba, M., Kaur, R., Kawakami, T., Kawashima, S., Khalidi, N., Khan, A., Kikuchi, M., Kilic, L., Kimura, M., King, M. J., Klapa, S., Klocke, R., Kobayashi, T., Kobayashi, S., Komagata, Y., Kronbichler, A., Kuczia, P., Kumar, M. S., Kurosawa, M., Lamprecht, P., Langford, C. A., Lanyon, P., Laversuch, C., Lee, S. J., Leoni, S., Li, J., Liang, K., Liang, P., Liao, H., Lee, L. A., Luqmani, R. A., Lyle, A., Macdonald, M., Mackie, S. L., Madden, L., Magliano, M., Makino, H., Makol, A., Malaiya, R., Malaviya, A., Manthri, R., Maritati, F., Da Silva, A. M., Mason, J. C., Matara, C., Matsui, K., Matteson, E. L., Mcbride, D., Mccullough, K., Mcgeoch, L., Mclaren, J., Mcmillian, C., Mendiratta, N., Menon, A., Merinopoulos, D., Merkel, P., Messier, S., Micheletti, R. G., Mills, K., Milman, N., Minoda, M., Minz, R. W., Mock, C., Mohammad, A. J., Moiseev, S., Moitinho, M., Molloy, E., Monach, P. A., Montgomery, M., Moosig, F., Moradizadeh, M., Morgan, M., Morgan, A. W., Morgan, A. -M., Muir, A., Mukhtyar, C., Muller, A., Muratore, F., Muso, E., Nada, R., Nakajima, H., Nakajima, T., Nakano, H., Nandagudi, A., Neumann, T., Y. F., Ng, K. H., Ng, Nogueira, E. L., Nolkha, N., Nordstrom, D., Novikov, P., Nugaliyadde, A., O'Donnell, J. L., O'Donoghue, J., O'Neill, L., O'Riordan, E., Oatley, M., Okubo, K., Oliva, E., Oshikawa, H., Ota, Y., Padoan, R., Pagnoux, C., Pan, L., Panaritis, K., Park, J. K., Patel, S., Patil, P., Pazzola, G., Peall, A., Pearce, F., Pehlevan, S., Pereira, L., Pettersson, T., Pineau, C. A., Pirila, L., Poglodek, B., Ponte, C., Prieto-Gonzalez, S., Priya, S. R., Purewal, B., Purschke, S., Putaala, J., Quickert, S., Quincey, V., Raghuvanshi, S., Rajasekhar, L., Ranganathan, D., Rathi, M., Rees, D., Rees, F., Renken, U., Restuccia, G., Rhee, R. L., Rice, B., Robins, D., Robson, J., Rodrigues, M., Romao, V. C., Rotar, C., Ruediger, C., Rutgers, A., A. C., Sa, Saavedra, M. J., Sada, K. -E., Sahbudin, I., Salvarani, C., Sandhu, N., Santos, E., Sato, Y., Schafer, V. S., Schiavon, F., Schmidt, W. A., Segelmark, M., Shahin, A., Sharma, A., Shotton, J., Silva, C., Singer, O. G., Sivasuthan, G., Smolen, S., Solanich-Moreno, X., Boixader, L. S., Song, Y. W., Springer, J., Sreih, A. G., Srivastava, R., Stamp, L. K., Stevens, R., Strbian, D., Sugino, K., Sunderkotter, C., Suppiah, R., Suzuki, K., Szekanecz, Z., Sznajd, J., Taimen, K., Tak, P. P., Takeuchi, T., Takizawa, N., Tames, L., Tan, B. E., Tanaka, M., Tang, M. W., Tatlisumak, T., Tesar, V., Thomas, A., Tian, X., Tokunaga, K., Tombetti, E., Tomsic, M., Toz, B., Tsukamoto, T., Uchida, S., Unal, A. U., Urban, M. L., Usui, J., Vaglio, A., Venkatachalam, S., Vermaak, E., Viswanath, V., Wada, T., Wagh, S., Wallace, D. J., Walters, G., Walz, B., Wan, J., Wang, T., Wang, G., Warrington, K. J., Watts, R. A., Wawrzycka-Adamczyk, K., Weeratunga, P., Weisman, M. H., Wickramasinghe, S., Williams, M., Wojcik, K., Woodruff, L., Xenitidis, T., Yamada, H., Yamagata, K., Yee, C. -S., Yoon, M., Yoshida, K., Yoshifuji, H., Ytterberg, S. R., Yumura, W., Zayed, H., Zeng, X., Zhao, M. -H., Zugaj, A., Zuk, J., İç Hastalıkları, Clinical Haematology, and Translational Immunology Groningen (TRIGR)

Subjects
Male, Outcome, Antineutrophil Cytoplasmic, 030232 urology & nephrology, 0302 clinical medicine, Risk Factors, 80 and over, Pharmacology (medical), Age of Onset, Young adult, Aged, 80 and over, education.field_of_study, age, anti-neutrophil cytoplasmic antibody-associated vasculitis, outcome, Adolescent, Adult, Aged, Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis, Antibodies, Antineutrophil Cytoplasmic, Female, Humans, Middle Aged, Morbidity, Prognosis, Retrospective Studies, Risk Assessment, Survival Rate, United Kingdom, Young Adult, Vasculitis, Systemic vasculitis, medicine.medical_specialty, Population, anti-neutrophil cytoplasmic antibody–associated vasculitis, Antibodies, 03 medical and health sciences, Rheumatology, Internal medicine, medicine, education, Anti-neutrophil cytoplasmic antibody–associated vasculitis, Survival rate, Anti-neutrophil cytoplasmic antibody, 030203 arthritis & rheumatology, business.industry, Retrospective cohort study, medicine.disease, Age of onset, business
Abstract

Objectives ANCA-associated vasculitis (AAV) can affect all age groups. We aimed to show that differences in disease presentation and 6 month outcome between younger- and older-onset patients are still incompletely understood. Methods We included patients enrolled in the Diagnostic and Classification Criteria for Primary Systemic Vasculitis (DCVAS) study between October 2010 and January 2017 with a diagnosis of AAV. We divided the population according to age at diagnosis: Results A total of 1338 patients with AAV were included: 66% had disease onset at Conclusion Within 6 months of diagnosis of AAV, patients >65 years of age display a different pattern of organ involvement and an increased risk of significant damage and mortality compared with younger patients.

Published
2021
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7. 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology Classification Criteria for Eosinophilic Granulomatosis With Polyangiitis

Author

Grayson, P. C., Ponte, C., Suppiah, R., Robson, J. C., Craven, A., Judge, A., Khalid, S., Hutchings, A., Luqmani, R. A., Watts, R. A., Merkel, P. A., Gatenby, P., Hill, C., Ranganathan, D., Kronbichler, A., Blockmans, D., Barra, L., Carette, S., Pagnoux, C., Dhindsa, N., Fifi-Mah, A., Khalidi, N., Liang, P., Milman, N., Pineau, C., Tian, X., Wang, G., Wang, T., Zhao, M. -H., Tesar, V., Baslund, B., Hammam, N., Shahin, A., Pirila, L., Putaala, J., Hellmich, B., Henes, J., Lamprecht, P., Neumann, T., Schmidt, W., Sunderkoetter, C., Szekanecz, Z., Danda, D., Das, S., Gupta, R., Rajasekhar, L., Sharma, A., Wagh, S., Clarkson, M., Molloy, E., Salvarani, C., Schiavon, F., Tombetti, E., Vaglio, A., Amano, K., Arimura, Y., Dobashi, H., Fujimoto, S., Harigai, M., Hirano, F., Hirahashi, J., Honma, S., Kawakami, T., Kobayashi, S., Kono, H., Makino, H., Matsui, K., Muso, E., Suzuki, K., Ikeda, K., Takeuchi, T., Tsukamoto, T., Uchida, S., Wada, T., Yamada, H., Yamagata, K., Yumura, W., Lai, K. S., Flores-Suarez, L. F., Hinojosa, A., Rutgers, B., Tak, P. -P., Grainger, R., Quincey, V., Stamp, L., Besada, E., Diamantopoulos, A., Sznajd, J., Azevedo, E., Geraldes, R., Rodrigues, M., Santos, E., Song, Y. -W., Moiseev, S., Hocevar, A., Cid, M. C., Moreno, X. S., Atukorala, I., Berglin, E., Mohammed, A., Segelmark, M., Daikeler, T., Direskeneli, H., Hatemi, G., Kamali, S., Karadag, O., Pehlevan, S., Adler, M., Basu, N., Bruce, I., Chakravarty, K., Dasgupta, B., Flossmann, O., Gendi, N., Hassan, A., Hoyles, R., Jayne, D., Jones, C., Klocke, R., Lanyon, P., Laversuch, C., Luqmani, R., Robson, J., Magliano, M., Mason, J., Maw, W. W., Mcinnes, I., Mclaren, J., Morgan, M., Morgan, A., Mukhtyar, C., O'Riordan, E., Patel, S., Peall, A., Venkatachalam, S., Vermaak, E., Menon, A., Watts, R., Yee, C. -S., Albert, D., Calabrese, L., Chung, S., Forbess, L., Gaffo, A., Gewurz-Singer, O., Grayson, P., Liang, K., Matteson, E., Springer, J., Sreih, A., and Translational Immunology Groningen (TRIGR)

Subjects
Adult, Male, Vasculitis, Myeloblastin, Immunology, Churg-Strauss Syndrome, Sensitivity and Specificity, General Biochemistry, Genetics and Molecular Biology, Antibodies, Antineutrophil Cytoplasmic, Diagnosis, Differential, Rheumatology, Risk Factors, Humans, Immunology and Allergy, anti-neutrophil cytoplasm antibody, Prospective Studies, Aged, Granulomatosis with Polyangiitis, Reproducibility of Results, Middle Aged, United States, Female, eosinophilic granulomatosis with polyangiitis, Eosinophilic Granuloma, Europe, classification, Societies
Abstract

ObjectiveTo develop and validate revised classification criteria for eosinophilic granulomatosis with polyangiitis (EGPA).MethodsPatients with vasculitis or comparator diseases were recruited into an international cohort. The study proceeded in five phases: (1) identification of candidate criteria items using consensus methodology, (2) prospective collection of candidate items present at the time of diagnosis, (3) data-driven reduction of the number of candidate items, (4) expert panel review of cases to define the reference diagnosis and (5) derivation of a points-based risk score for disease classification in a development set using least absolute shrinkage and selection operator logistic regression, with subsequent validation of performance characteristics in an independent set of cases and comparators.ResultsThe development set for EGPA consisted of 107 cases of EGPA and 450 comparators. The validation set consisted of an additional 119 cases of EGPA and 437 comparators. From 91 candidate items, regression analysis identified 11 items for EPGA, 7 of which were retained. The final criteria and their weights were as follows: maximum eosinophil count ≥1×109/L (+5), obstructive airway disease (+3), nasal polyps (+3), cytoplasmic antineutrophil cytoplasmic antibody (ANCA) or anti-proteinase 3–ANCA positivity (−3), extravascular eosinophilic predominant inflammation (+2), mononeuritis multiplex/motor neuropathy not due to radiculopathy (+1) and haematuria (−1). After excluding mimics of vasculitis, a patient with a diagnosis of small- or medium-vessel vasculitis could be classified as having EGPA if the cumulative score was ≥6 points. When these criteria were tested in the validation data set, the sensitivity was 85% (95% CI 77% to 91%) and the specificity was 99% (95% CI 98% to 100%).ConclusionThe 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology Classification Criteria for Eosinophilic Granulomatosis with Polyangiitis demonstrate strong performance characteristics and are validated for use in research.

Published
2022
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9. Carbon and [sup.15]nitrogen isotopes in autopsy liver tissue samples from Greenlandic Inuit and Danes: consumption of marine versus terrestrial food

Author

Milman, N., Laursen, J., Mulvad, G., Pedersen, H.S., Pedersen, A.N., and Saaby, H.

Subjects
Carbon -- Isotopes, Nitrogen -- Isotopes, Inuit -- Food and nutrition -- Health aspects, Food habits -- Research -- Physiological aspects -- Analysis -- Health aspects
Abstract

Background/Objectives: The content of [sup.13]C and [sup.15]N isotopes is higher in marine than in terrestrial food. [sup.13]C and [sup.15]N in human tissue therefore reflects the relative proportions of marine and terrestrial food consumed by the individual. The objective of this study was to measure [sup.13]C and [sup.15]N in liver tissue from Greenlandic Inuit and Danes. Subjects/Methods: Normal liver tissue was obtained at autopsy in 1992-1994 from 60 Inuit with a median age of 61 years (range 25-83) and in 1986 from 15 ethnic Danes with a median age of 84 years (range 66-93). By sieving, liver tissue was separated in a 'cellular fraction' and a 'connective tissue fraction'. [sup.13]C and [sup.15]N in dry liver tissue was measured on a mass spectrometer. [δ.sup.13]C indicates the [sup.13]C content relative to the IAEA-CH-6 reference standard. [δ.sup.15]N indicates [sup.15]N content relative to the atmospheric nitrogen reference standard. Results: Inuit: median [δ.sup.13]C was -21.2% in cellular and -20.0% in connective tissue fractions (P = 0.001). Median [δ.sup.15]N was 10.6% in both cellular and connective tissue fractions. Body mass index was negatively correlated with [δ.sup.13]C in the connective tissue fraction ([r.sub.s] = -0.42, P = 0.057). Danes: median [δ.sup.13]C was -27.0% in cellular and -24.3% in connective tissue fractions (P = 0.11). Median [δ.sup.15]N was 9.5% in cellular and 8.9% in connective tissue fractions (P = 0.5). Inuit had higher [δ.sup.13]C than Danes in both cellular and connective tissue fractions (P< 0.001) as well as higher [δ.sup.15]N in the cellular fraction (P = 0.01). Conclusions: Inuit showed considerable variation in the ratio between marine and terrestrial food consumption, reflecting a vanishing hunter culture where elderly Inuit still adhere to the traditional hunters food with a high content of marine food, whereas the younger urbanized Inuit population consume food with a lower content of marine food and a higher content of terrestrial food. Danes consumed food of almost exclusively terrestrial origin. The present [sup.13]C and [sup.15]N analyses are in accordance with the dietary patterns obtained by dietary surveys. European Journal of Clinical Nutrition (2010) 64, 739-744; doi: 10.1038/ejcn.2010.67; published online 2 June 2010 Keywords: [sup.13]carbon; Denmark; Eskimos; Greenland; Inuit; liver; mass spectrometry; [sup.15]nitrogen, Introduction You are what you eat! This slogan indicates that the composition of body tissues reflects the dietary intake of the individual. All atoms in human tissues, except hydrogen and [...]

Published
2010
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11. Iron supplementation in pregnant Danish women revisited: Effects on prepartum and postpartum iron deficiency, anemia, serum erythropoietin; including iron status, erythropoietin and anthropometrics in newborns. A randomized, placebo-controlled study.

Author

Milman, N. T.

Subjects
*IRON in the body, *IRON deficiency, *IRON deficiency anemia, *NEWBORN infants, *ERYTHROPOIETIN
Abstract

OBJECTIVE: To assess effects of iron supplementation, 66 mg elemental iron daily as ferrous fumarate, on iron status markers during normal pregnancies. METHODS: Randomized, double-blind, placebo-controlled study of 119 women (62 iron-, 57 placebo -treated) and their newborns. Hemoglobin (Hb), serum (S)-ferritin, S-transferrin saturation percentage (TSAT) and S-erythropoietin (S-EPO) were measured at 14–18, 24–27 weeks of gestation, prepartum, 1 and 8 weeks postpartum. RESULT: From 24–27 weeks gestation to 8 weeks postpartum, the iron group had higher Hb, S-ferritin and TSAT than the placebo group; prepartum, 11% had iron deficiency (ID) and 0% iron deficiency anemia (IDA) in the iron group, vs 60% and 18% in the placebo group; 8 weeks postpartum 1.6% in the iron group had ID and 1.6% IDA vs 14% and 7% in the placebo group. S-EPO levels in the iron group were lower than in the placebo group (p < 0.001). Mothers prepartum S-EPO values were correlated to newborns cord S-EPO values (p < 0.001). Newborns to iron treated mothers had higher cord S-ferritin levels than those to placebo treated mothers (p = 0.02). Newborn girls had higher cord S-ferritin levels than boys (p < 0.01). There was no impact of iron supplementation on the length of gestation, placental weight, or newborns birth weight. Birth weight was correlated only with mothers' body weight, length of gestation and placental weight. CONCLUSION: Iron supplementation had a "positive" impact on iron status and Hb both during pregnancy and postpartum, with a low frequency of ID/IDA and also a "positive" influence on newborns iron status. [ABSTRACT FROM AUTHOR]

Published
2022
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23. Feasibility and construct validation of the patient reported outcomes measurement information system in systemic vasculitis

Author

Tomasson, G, Farrar, JT, Cuthbertson, D, McAlear, CA, Ashdown, S, Cronholm, PF, Dawson, J, Gebhart, D, Lanier, G, Luqmani, RA, Milman, N, Peck, J, Robson, JC, Shea, JA, Carette, S, Khalidi, N, Koening, CL, Langford, CA, Monach, PA, Moreland, L, Pagnoux, C, Specks, U, Sreih, AG, Ytterberg, SR, Merkel, PA, and Consortium, Vasculitis Clinical Research

Subjects
Adult, Male, Patient-Reported Outcomes Measurement Information System, medicine.medical_specialty, Immunology, Anti-Inflammatory Agents, Pain, Physical function, Article, Disease activity, Disability Evaluation, 03 medical and health sciences, Cognition, 0302 clinical medicine, Rheumatology, Humans, Immunology and Allergy, Medicine, Longitudinal Studies, Patient Reported Outcome Measures, 030212 general & internal medicine, Longitudinal cohort, Fatigue, Aged, 030203 arthritis & rheumatology, business.industry, Systemic Vasculitis, Construct validity, Middle Aged, Social Participation, medicine.disease, Cross-Sectional Studies, Quality of Life, Physical therapy, Feasibility Studies, Female, Patient-reported outcome, Computerized adaptive testing, business, Systemic vasculitis
Abstract

Objective.The Patient Reported Outcome Measurement Information System (PROMIS) is a collection of item banks of self-reported health. This study assessed the feasibility and construct validity of using PROMIS instruments in vasculitis.Methods.Data from a multicenter longitudinal cohort of subjects with systemic vasculitis were used. Instruments from 10 PROMIS item banks were selected with direct involvement of patients. Subjects completed PROMIS instruments using computer adaptive testing (CAT). The Medical Outcomes Study Short Form-36 (SF-36) was also administered. Cross-sectional construct validity was assessed by calculating correlations of PROMIS scores with SF-36 measures and physician and patient global scores for disease activity. Longitudinal construct validity was assessed by correlations of between-visit differences in PROMIS scores with differences in other measures.Results.During the study period, 973 subjects came for 2306 study visits and the PROMIS collection was completed at 2276 (99%) of visits. The median time needed to complete each PROMIS instrument ranged from 40 to 55 s. PROMIS instruments correlated cross-sectionally with individual scales of the SF-36, most strongly with subscales of the SF-36 addressing the same domain as the PROMIS instrument. For example, PROMIS fatigue correlated with both the physical component score (PCS; r = −0.65) and with the mental component score (MCS; r = −0.54). PROMIS physical function correlated strongly with PCS (r = 0.81) but weakly with MCS (r = 0.29). Weaker correlations were observed longitudinally between change in PROMIS scores with change in PCS and MCS.Conclusion.Collection of data using CAT PROMIS instruments is feasible among patients with vasculitis and has some cross-sectional and longitudinal construct validity.

Published
2019
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26. A disease-specific patient-reported outcome for anti-neutrophil cytoplasmic antibody–associated vasculitis: scale structure and measurement properties of the anti-neutrophil cytoplasmic antibody-associated vasculitis patient-reported outcome measure

Author

Robson, J, Dawson, J, Shea, J, Doll, H, Ashdown, S, Borchin, R, Easley, E, Farrar, J, Gebhart, D, Kellom, K, Lanier, G, Luqmani, R, McAlear, C, Mills, J, Milman, N, Peck, J, Tomasson, G, Cronholm, P, and Merkel, P

Published
2019
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43. Contributors and Hemochromatosis International Taskforce. Therapeutic recommendations in HFE hemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype

Author

Adams, P., Altes, A., Brissot, P., Butzeck, B., Cabantchik, I., Cançado, R., Distante, S., Evans, P., Evans, R., Ganz, T., Girelli, D., Hultcrantz, R., McLaren, G., Marris, B., Milman, N., Nemeth, E., Nielsen, P., Pineau, B., Piperno, A., Porto, G., Prince, D., Ryan, J., Sanchez, M., Santos, P., Swinkels, D.W., Teixeira, E., Toska, K., Vanclooster, A., and White, D.P.

Subjects
Renal disorders Radboud Institute for Molecular Life Sciences [Radboudumc 11]
Abstract

Item does not contain fulltext

Published
2018

45. Therapeutic recommendations in HFE hemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype

Author

Adams, P, Altes, A, Brissot, P, Butzeck, B, Cabantchik, I, Cançado, R, Distante, S, Evans, P, Evans, R, Ganz, T, Girelli, D, Hultcrantz, R, Mclaren, G, Marris, B, Milman, N, Nemeth, E, Nielsen, P, Pineau, B, Piperno, A, Porto, G, Prince, D, Ryan, J, Sanchez, M, Santos, P, Swinkels, D, Teixeira, E, Toska, K, Vanclooster, A, White, D, Adams, Paul, Altes, Albert, Brissot, Pierre, Butzeck, Barbara, Cabantchik, Ioav, Cançado, Rodolfo, Distante, Sonia, Evans, Patricia, Evans, Robert, Ganz, Tomas, Girelli, Domenico, Hultcrantz, Rolf, McLaren, Gordon, Marris, Ben, Milman, Nils, Nemeth, Elizabeta, Nielsen, Peter, Pineau, Brigitte, Piperno, Alberto, Porto, Graça, Prince, Dianne, Ryan, John, Sanchez, Mayka, Santos, Paulo, Swinkels, Dorine, Teixeira, Emerência, Toska, Ketil, Vanclooster, Annick, White, Desley, Adams, P, Altes, A, Brissot, P, Butzeck, B, Cabantchik, I, Cançado, R, Distante, S, Evans, P, Evans, R, Ganz, T, Girelli, D, Hultcrantz, R, Mclaren, G, Marris, B, Milman, N, Nemeth, E, Nielsen, P, Pineau, B, Piperno, A, Porto, G, Prince, D, Ryan, J, Sanchez, M, Santos, P, Swinkels, D, Teixeira, E, Toska, K, Vanclooster, A, White, D, Adams, Paul, Altes, Albert, Brissot, Pierre, Butzeck, Barbara, Cabantchik, Ioav, Cançado, Rodolfo, Distante, Sonia, Evans, Patricia, Evans, Robert, Ganz, Tomas, Girelli, Domenico, Hultcrantz, Rolf, McLaren, Gordon, Marris, Ben, Milman, Nils, Nemeth, Elizabeta, Nielsen, Peter, Pineau, Brigitte, Piperno, Alberto, Porto, Graça, Prince, Dianne, Ryan, John, Sanchez, Mayka, Santos, Paulo, Swinkels, Dorine, Teixeira, Emerência, Toska, Ketil, Vanclooster, Annick, and White, Desley

Abstract

Although guidelines are available for hereditary hemochromatosis, a high percentage of the recommendations within them are not shared between the different guidelines. Our main aim is to provide an objective, simple, brief, and practical set of recommendations about therapeutic aspects of HFE hemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype, based on the published scientific studies and guidelines, in a form that is reasonably comprehensible to patients and people without medical training. This final version was approved at the Hemochromatosis International meeting on 12th May 2017 in Los Angeles

Published
2018

46. Patient blood management in obstetrics: management of anaemia and haematinic deficiencies in pregnancy and in the post-partum period: NATA consensus statement

Author

Muñoz, M; https://orcid.org/0000-0002-2052-8959, Peña-Rosas, J P, Robinson, S; https://orcid.org/0000-0001-5279-5536, Milman, N, Holzgreve, W, Breymann, C, Goffinet, F, Nizard, J, Christory, F, Samama, C-M, Hardy, J-F, Muñoz, M; https://orcid.org/0000-0002-2052-8959, Peña-Rosas, J P, Robinson, S; https://orcid.org/0000-0001-5279-5536, Milman, N, Holzgreve, W, Breymann, C, Goffinet, F, Nizard, J, Christory, F, Samama, C-M, and Hardy, J-F

Published
2018

47. Assessment of disease activity in large-vessel vasculitis: Results of an international delphi exercise

Author

Aydin, S. Z., Direskeneli, H., Merkel, P. A., Toloza, S., Blockmans, D., Sato, E. I., De Souza, A. W. S., Cabral, D., Carette, S., Famorca, L., Khalidi, N., Milman, N., Yacyshyn, E., Tesar, V., Baslund, B., Faurschou, M., Guillevin, L., Puechal, X., Aries, P., Hellmich, B., Herlyn, K., Holle, J., Lamprecht, P., Moosig, F., Neumann, T., Zwerina, J., Tomasson, G., Bambery, P., Jois, R., Rajasekhar, L., Sharma, A., Sivakumar, R., Molloy, E., Hashkes, P., Catapano, F., Cimino, L., De Fanti, A., Pipitone, N., Salvarani, C., Vaglio, A., Kobayashi, S., Suzuki, K., Flores-Suarez, L. F., Hinojosa-Azaola, A., Brouwer, E., Rutgers, A., Stegeman, C., Suppiah, R., Hollan, I., Arguis, P., Cid, M. C., Daikeler, T., Alibaz-Oner, F., Hamuryudan, V., Hatemi, G., Hazirolan, T., Inanc, M., Kalayci, M. B., Kamali, S., Kansu, T., Karaaslan, Y., Karadag, O., Keser, G., Onat, A. M., Ozbalkan, Z., Ozen, S., Ozer, H. T. E., Pamuk, O. N., Yilmaz, S. G., Basu, N., Casian, A., Chakravarty, K., D'Cruz, D., Edelsten, C., Harper, L., Jayne, D., Levy, J., Mason, J., Robson, J., Scott, D., Stanford, M., Watts, R., Albert, D., Amudala, N., Beckman, J., Chacko, B., Chung, S., Fessler, B., Giardino, A., Grayson, P., Hunder, G., Langford, C., Lerman, M., Liang, K., Litt, H., Mason, T., Matteson, E., Mikdashi, J., Mohler, E., Monach, P., Rice, B., Sreih, A., Stone, J., Tsapatsaris, N., Villa-Forte, A., Warrington, K., Yazici, Y., Ytterberg, S., Çukurova Üniversitesi, Aydin, S.Z., Direskeneli, H., Merkel, P.A., Toloza, S., Blockmans, D., Sato, E.I., De Souza, A.W.S., and Yeditepe Üniversitesi

Subjects
Vasculitis, medicine.medical_specialty, Delphi Technique, Immunology, Delphi method, Outcomes, Severity of Illness Index, Article, Disease activity, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Large vessel vasculitis, Severity of illness, medicine, Large vessel, Humans, Immunology and Allergy, 030212 general & internal medicine, computer.programming_language, Giant cell arteritis, 030203 arthritis & rheumatology, Takayasu arteritis, business.industry, medicine.disease, Clinical trial, Physical therapy, business, computer, Delphi
Abstract

PubMedID: 28864648 Objective. To arrive at consensus for candidate outcomes for disease activity assessment in largevessel vasculitis (LVV) in clinical trials. Methods.A Delphi survey including 99 items was circulated among international experts for 3 rounds. Results. Fifty-seven items were accepted for both giant cell arteritis and Takayasu arteritis. Sixty-seven percent of experts voted to have a common approach for both diseases with additional disease-specific items such as weight loss, scalp tenderness/necrosis, morning stiffness, dizziness, visual symptoms, and imaging. Conclusion. This study highlights similarities and differences in experts' perspectives for assessing clinical activity in LVV and may guide a consensus-driven core set of validated outcomes. Copyright © 2017. All rights reserved. National Institute of Arthritis and Musculoskeletal and Skin Diseases: U01 AR51874 04, U54 AR057319 National Center for Research Resources: U54 RR019497 Sponsored by the Vasculitis Clinical Research Consortium, which has received support from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54 AR057319 and U01 AR51874 04), the National Center for Research Resources (U54 RR019497), and the Office of Rare Diseases Research. Additional support for the work of the OMERACT Vasculitis Working Group was received through a Patient-Centered Outcomes Research Institute Pilot Project Grant. S.Z. Aydin, MD, Associate Professor, Division of Rheumatology, The Ottawa Hospital Research Institute, University of Ottawa; H. Direskeneli, MD, Professor of Rheumatology, Division of Rheumatology, Marmara University Faculty of Medicine; P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania. Address correspondence to Dr. P.A. Merkel, Section of Rheumatology, University of Pennsylvania, White Building, 5th Floor Penn, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel@upenn.edu Accepted for publication June 3, 2017.

Published
2017

49. Patient blood management in obstetrics: management of anaemia and haematinic deficiencies in pregnancy and in the post‐partum period: NATA consensus statement

Author

Muñoz, M., primary, Peña‐Rosas, J. P., additional, Robinson, S., additional, Milman, N., additional, Holzgreve, W., additional, Breymann, C., additional, Goffinet, F., additional, Nizard, J., additional, Christory, F., additional, Samama, C.‐M., additional, and Hardy, J.‐F., additional

Published
2017
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