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Volume 35, Issue 1, March 2024



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Mediterr J Rheumatol 2022;33(1):55-62
Developing A Minimum Data Set for A Rheumatoid Arthritis Registry in Iran
Authors Information
1. Department of Health Information Management, Iran University Of Medical Sciences, Tehran, Iran,
2. Department of Health Information Technology, Army University Of Medical Sciences, Tehran, Iran,
3. Tehran University of Medical Sciences, Tehran, Iran
4. Department of Health Information Technology, Khalkhal University of Medical Sciences, Khalkal, Iran,
5. Department of Rheumatology, Shahid Beheshti University of Medical Sciences, Tehran, Iran
References
  1. Gibofsky A. Overview of epidemiology, pathophysiology, and diagnosis of rheumatoid arthritis. Am J Manag Care 2012;18(13):295-302.
  2. Hennessey V, Novelo LL, Li J, Zhu L, Huang X, Chi E, et al. A bayesian joint model for longitudinal DAS28 scores and competing risk informative drop out in a rheumatoid arthritis clinical trial [Online]. Cornell University Library; 2018 [cited 2018 Jul 28]. Available from: https://arxiv.org/abs/1801.08628.
  3. Alemao E, Joo S, Kawabata H, AL JM, Allison PD, Molken MPM, et al. Effects of achieving target measures in rheumatoid arthritis on functional status,quality of life, and resource utilization:Analysis of clinical practice data. Arthritis Care Res 2016;68(3):308-17.
  4. Mierzecki A, Strecker D, Radomska K. A pilot study on zinc levels in patients with rheumatoid arthritis. Biol Trace Elem Res 2011;143(2):854-62.
  5. Vega d, Carvalho H, Ventura RoL, Robles G, Casado G. The importance of rheumatology biologic registries in Latin America. Rheumatol Int 2013;33(4):827-35.
  6. Hosseini Moghadam M, Ali Nazarinia M. The effect of educational program on self-efficacy of women with rheumatoid arthritis: A randomized controlled clinical trial. Int J Community Based Nurs Midwifery 2018;6(1):12-20.
  7. Smeltzer SCQ, Bare BG. Brunner and Suddarth`s Textbook of Medical-Surgical Nursing. 10 th ed. Philadelphia: Lippincott Williams & Wilkins; 2016.
  8. Monti S, Montecucco C, Bugatti S, Caporali R. Rheumatoid arthritis treatment: the earlier the better to prevent joint damage. RMD Open 2015;1(Suppl 1):e000057.
  9. Radner H, Chatzidionysiou K, Nikiphorou E, Gossec L, Hyrich KL, Zabalan C, et al. 2017 EULAR recommendations for a core data set to support observational research and clinical care in rheumatoid arthritis. Ann Rheum Dis 2018;77(4):476-9. PMID: 29301783.
  10. Radner H, Dixon W, Hyrich K, Askling J. Consistency and utility of data items across European rheumatoid arthritis clinical cohorts and registers. Arthritis Care Res 2015;67(9):1087-93.
  11. Vollenhoven van R, Askling  J. Rheumatoid arthritis registry in Sweden. Clin Exp Rheumatol 2005;23(5 Suppl 39):195-200.
  12. Finckh A, Courvoisier D. Lessons learned from rheumatoid arthritis registries. Joint Bone Spine 2018;85(3):271-4.
  13. Johnson N, Murphy A, McNeese N, Reddy M, Purao S. A survey of rural hospitals' perspectives on health information technology outsourcing. AMIA Annu Symp Proc 2013;2013:732-41.
  14. Khresheh R, Barclay L. Implementation of a new birth record in three hospitals in Jordan: a study of health system improvement. Health Policy Plan 2007;23(1):76-82.
  15. Karimi S, Saghaeiannejad Isfahani S, Farzandipour M, Esmaeili ghayoumabadi M. Comparative study of minimum data sets of health information management of organ transplantation in selected countries and presenting appropriate solution for iran. Health Inf Manag 2011;7(special issue).
  16. Chauvin J, Shukla M, Rice J, Rispel L. A survey of the governance capacity of national public health associations to enhance population health. BMC Public Health 2016;16:251.
  17. Tavares J, Oliveira T. Electronic Health Record Patient Portal Adoption by Health Care Consumers: An Acceptance Model and Survey. J Med Internet Res 2016;18(3):e49-e.
  18. Ghazi Saeedi M, Akhlaghi Kalahroodi M, Niakan Kalhori R Sh, Omidvari Abarghuei E. Identifying system information requirements: The frst step in designing a registration system for patients with rheumatoid arthritis. Payavard salamat 2019;12(5):376-85.
  19. Azadi T, Sadoughi F, Khorasani-Zavareh D. Using modified Delphi method to propose and validate components of child injury surveillance system for Iran. Chin J Traumatol 2020;23(5):274-9.
  20. McErlane F, Armitt G, Cobb J, Bailey K, Cleary G, Douglas S, et al. CAPTURE-JIA: a consensus-derived core dataset to improve clinical care for children and young people with juvenile idiopathic arthritis. Rheumatology 2020;59(1):137-45.
  21. Bajraktari IH, Teuta BC, Vjollca SM, Bajraktari H, Saiti V, Krasniqi B. Demographic features of patients with rheumatoid arthritis in Kosovo. Medical Archives 2014;68(6):407-10.
  22. Monti S, Klersy C, Gorla R, Sarzi-Puttini P, Atzeni F, Pellerito R, et al. Factors influencing the choice of first- and second-line biologic therapy for the treatment of rheumatoid arthritis: real-life data from the Italian LORHEN Registry. Clin Rheumatol 2017;36(4):753-61.
  23. Østergaard M, Møller-Bisgaard S. Optimal use of MRI in clinical trials, clinical care and clinical registries of patients with rheumatoid arthritis. Clin Exp Rheumatol 2014;32(5 Suppl 85):S-17-22.
  24. Lopez-Olivo MA, Amezaga Urruela M, McGahan L, Pollono EN, Suarez-Almazor ME. Rituximab for rheumatoid arthritis. Cochrane Database Syst Rev 2015 Jan 20;1:Cd007356.
  25. Michaud K, Berglind N, Franzén S, Frisell T, Garwood C, Greenberg JD, et al. Can rheumatoid arthritis (RA) registries provide contextual safety data for modern RA clinical trials? The case for mortality and cardiovascular disease. Ann Rheum Dis 2016 Oct;75(10):1797-805.
  26. Ahmadi H, Sadoughi F, Azadi T, Shahmoradi L, editors. Hospital Information System (HIS) Performance in the Post-implementation Stage. 2018 59th International Scientific Conference on Information Technology and Management Science of Riga Technical University (ITMS);2018 10-12 Oct 2018.
  27. Ahmadi M, Mehrabi N, Sheikhtaheri A, Sadeghi M. Acceptability of picture archiving and communication system (PACS) among hospital healthcare personnel based on a unified theory of acceptance and use of technology. Electron Physician 2017 Sep;9(9):5325-30.
  28. Azadi T, Khorasani-Zavareh D, Sadoughi F. Barriers and facilitators of implementing child injury surveillance system. Chin J Traumatol 2019;22(4):228-32. PMID: 31208791.
  29. Mehrabi N, Langarizadeh M, Ahmadzadeh A. Challenges of rheumatoid arthritis registry in iran: Qualitative content analysis. Crescent J Med Biol Sci 2019;6(4):455–46.
  30. Abdelhak M, Grostick S, Hanken MA. Health information: Management of a strategic resource. USA: Elsevier Health Sciences; 2014.
  31. Nikiphorou E, Mackie SL, Kirwan J, Boers M, Isaacs J, Morgan AW, Young A. Achieving consensus on minimum data items (including core outcome domains) for a longitudinal observational cohort study in rheumatoid arthritis. Rheumatology 2017;56(4):550-5.