The rheumatry registry: design and data collection methods.

Publisher: BioMed Central Ltd Country of Publication: England NLM ID: 101738571 Publication Model: Electronic Cited Medium: Internet ISSN: 2520-1026 (Electronic) Linking ISSN: 25201026 NLM ISO Abbreviation: BMC Rheumatol Subsets: PubMed not MEDLINE

Original Publication: [London] : BioMed Central Ltd., [2017]-

Declarations. Ethics approval and consent to participate: The study protocol was approved by the Research Ethics Committee of Tehran University of Medical Sciences. All participants provided written informed consent prior to enrollment. This study was conducted in accordance with the Declaration of Helsinki. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Kremer JM. The Corrona US registry of rheumatic and autoimmune diseases. Clin Exp Rheumatol. 2016;34(5 Suppl 101):S96–9. (PMID: 27762197)
Silman A, et al. British society for rheumatology biologics register. Ann Rheum Dis. 2003;62(2):ii28–9. (PMID: 10.1136/ard.62.suppl_2.ii28145321441766752)
Tyndall A, Mueller-Ladner U, Matucci-Cerinic M. Systemic sclerosis in europe: first report from the EULAR scleroderma trials and research (EUSTAR) group database. Ann Rheum Dis. 2005;64(7):1107. (PMID: 10.1136/ard.2005.036038159587751755555)
Watad A, et al. Rheumatology in the middle East in 2017: clinical challenges and research. Arthritis Res Ther. 2017;19(1):149. (PMID: 10.1186/s13075-017-1359-0286664855493117)
Almoallim H, et al. A review of the prevalence and unmet needs in the management of rheumatoid arthritis in Africa and the middle East. Rheumatol Therapy. 2021;8(1):1–16. (PMID: 10.1007/s40744-020-00252-1)
Hajjaj-Hassouni N, et al. The practical value of biologics registries in Africa and middle east: challenges and opportunities. Clin Rheumatol. 2012;31(3):407–16. (PMID: 10.1007/s10067-011-1918-822228237)
Al-Ajlouni YA, et al. The burden of musculoskeletal disorders in the middle East and North Africa (MENA) region: a longitudinal analysis from the global burden of disease dataset 1990–2019. BMC Musculoskelet Disord. 2023;24(1):439. (PMID: 10.1186/s12891-023-06556-x3725911910230769)
Jamshidi AR, et al. Estimating the prevalence and disease characteristics of rheumatoid arthritis in tehran: A WHO -ILAR COPCORD study (from Iran COPCORD study, urban study stage 1). Med J Islam Repub Iran. 2014;28:93. (PMID: 256642944301204)
Safiri S, et al. The burden of low back pain and its association with socio-demographic variables in the middle East and North Africa region, 1990–2019. BMC Musculoskelet Disord. 2023;24(1):59. (PMID: 10.1186/s12891-023-06178-3366830259869505)
Canhão H, et al. Reuma.pt - the rheumatic diseases Portuguese register. Acta Reumatol Port. 2011;36(1):45–56. (PMID: 21483280)
Stubbs E, et al. How to Establish and sustain a disease registry: insights from a qualitative study of six disease registries in the UK. BMC Med Inf Decis Mak. 2024;24(1):361. (PMID: 10.1186/s12911-024-02775-x)
Kay J, Upchurch KS. ACR/EULAR 2010 rheumatoid arthritis classification criteria. Rheumatology (Oxford). 2012;51(Suppl 6):vi5–9. (PMID: 10.1093/rheumatology/kes27923221588)
Arnett FC, et al. The American rheumatism association 1987 revised criteria for the classification of rheumatoid arthritis. Arthritis Rheum. 1988;31(3):315–24. (PMID: 10.1002/art.17803103023358796)
Hochberg MC. Updating the American college of rheumatology revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum. 1997;40(9):1725. (PMID: 10.1002/art.17804009289324032)
Petri M, et al. Derivation and validation of the systemic lupus international collaborating clinics classification criteria for systemic lupus erythematosus. Arthritis Rheum. 2012;64(8):2677–86. (PMID: 10.1002/art.34473225530773409311)
van den Hoogen F, et al. 2013 classification criteria for systemic sclerosis: an American college of rheumatology/European league against rheumatism collaborative initiative. Ann Rheum Dis. 2013;72(11):1747–55. (PMID: 10.1136/annrheumdis-2013-20442424092682)
Arend WP, et al. The American college of rheumatology 1990 criteria for the classification of Takayasu arteritis. Arthritis Rheum. 1990;33(8):1129–34. (PMID: 10.1002/art.17803308111975175)
Vorisek CN, et al. Fast healthcare interoperability resources (FHIR) for interoperability in health research: systematic review. JMIR Med Inf. 2022;10(7):e35724. (PMID: 10.2196/35724)
Studenic P, et al. Role of rheumatoid arthritis registries worldwide: what have they taught us? Best Pract Res Clin Rheumatol. 2025;39(1):102017. (PMID: 10.1016/j.berh.2024.10201739406599)
Kerr GS, et al. Takayasu arteritis. Ann Intern Med. 1994;120(11):919–29. (PMID: 10.7326/0003-4819-120-11-199406010-000047909656)
Moriwaki R, et al. Clinical manifestations of Takayasu arteritis in India and Japan–new classification of angiographic findings. Angiology. 1997;48(5):369–79. (PMID: 10.1177/0003319797048005019158381)

Keywords: Disease registry; Iran; Real-world data; Rheumatic diseases; Rheumatoid arthritis; Systemic lupus erythematosus

Date Created: 20260226 Date Completed: 20260313 Latest Revision: 20260315

20260315

PMC12983605

10.1186/s41927-026-00627-x

41742247