Document Type : Original Article
Multiple Sclerosis Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran
Background: The national multiple sclerosis (MS) registry is aimed at monitoring and improving quality of care and providing feedback to improve health outcomes by systematic recording of data. In 2018, the nationwide MS registry of Iran (NMSRI) was initiated for collecting epidemiological data and information on health care provision for patients with MS. The aim of the current study was to introduce the role of implementing coronavirus disease 2019 (COVID-19) scale-up registry protocol in NMSRI and arrange the national MS generality with information obtained during the COVID-19 pandemic.
Methods: The NMSRI group set up a program with crucial elements to collect the data of patients with MS who developed COVID-19. All MS cases with confirmed diagnosis of COVID-19 were enrolled in this study. New elements were considered to be added into the dataset, including demographic characteristics, definite diagnosis of COVID-19 and its
symptoms, history of comorbidities, history of medications and hospitalization, changes in magnetic resonance imaging (MRI), and infection outcomes.
Results: The COVID-19 data collection program was designed in NMSRI to collect data of MS cases with COVID-19 infection. The data collection protocol was explained to neurologists through an online training workshop. To the date of the study, 21 centers from 17 provinces of Iran were involved in the COVID-19 databases promoting NMSRI and 612 participants were registered successfully.
Conclusion: We extended an agreement on data collection and developed it in NMSRI with various contributors to discover a critical need for COVID-19 awareness and monitor clinical training in MS.
- Zareie B, Roshani A, Mansournia MA, Rasouli MA, Moradi G. A model for COVID-19 prediction in Iran based on China parameters. Arch Iran Med 2020; 23(4): 244-8.
- Chen X, Laurent S, Onur OA, Kleineberg NN, Fink GR, Schweitzer F, et al. A systematic review of neurological symptoms and complications of COVID-19. J Neurol 2021; 268(2): 392-402.
- Chiarini M, Paghera S, Moratto D, Rossi N, Giacomelli M, Badolato R, et al. Immunologic characterization of a immunosuppressed multiple sclerosis patient that recovered from SARS-CoV-2 infection. J Neuroimmunol 2020; 345: 577282.
- Ahmed SI, Aziz K, Gul A, Samar SS, Bareeqa SB. Risk of multiple sclerosis in Epstein-Barr virus infection. Cureus 2019; 11(9): e5699.
- Tarlinton RE, Martynova E, Rizvanov AA, Khaiboullina S, Verma S. Role of viruses in the pathogenesis of multiple sclerosis. Viruses 2020; 12(6): 643.
- Racke MK, Newsome SD. Multiple sclerosis and COVID-19: A great opportunity for databases promoting research and collaboration. J Neuroimmunol 2020; 345: 577283.
- Barzegar M, Mirmosayyeb O, Nehzat N, Sarrafi R, Khorvash F, Maghzi AH, et al. COVID-19 infection in a patient with multiple sclerosis treated with fingolimod. Neurol Neuroimmunol Neuroinflamm 2020; 7(4): e753.
- Sormani MP. An Italian programme for COVID-19 infection in multiple sclerosis. Lancet Neurol 2020; 19(6): 481-2.
- Naser MA, Shabany M, Heidari H, Eskandarieh S. Can pulse steroid therapy increase the risk of infection by COVID-19 in patients with multiple sclerosis? Clin Neurol Neurosurg 2021; 203: 106563.
- Rittenhouse DR, Shortell SM, Gillies RR, Casalino LP, Robinson JC, McCurdy RK, et al. Improving chronic illness care: Findings from a national study of care management processes in large physician practices. Med Care Res Rev 2010; 67(3): 301-20.
- Karter AJ, Parker MM, Moffet HH, Ahmed AT, Ferrara A, Liu JY, et al. Missed appointments and poor glycemic control: an opportunity to identify high-risk diabetic patients. Med Care 2004; 42(2): 110-5.
- Shahin S, Eskandarieh S, Moghadasi AN, Razazian N, Baghbanian SM, Ashtari F, et al. Multiple sclerosis national registry system in Iran: Validity and reliability of a minimum data set. Mult Scler Relat Disord 2019; 33: 158-61.
- Hartung HP, Graf J, Aktas O, Mares J, Barnett MH. Diagnosis of multiple sclerosis: Revisions of the McDonald criteria 2017 - continuity and change. Curr Opin Neurol 2019; 32(3): 327-37.
- World Medical Association. World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. JAMA 2013; 310(20): 2191-4.
- von Elm E, Altman DG, Egger M, Pocock SJ, Gotzsche PC, Vandenbroucke JP. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: Guidelines for reporting observational studies. Ann Intern Med 2007; 147(8): 573-7.
- Salehi S, Abedi A, Balakrishnan S, Gholamrezanezhad A. Coronavirus disease 2019 (COVID-19): A systematic review of imaging findings in 919 patients. AJR Am J Roentgenol 2020; 215(1): 87-93.
- Chen N, Zhou M, Dong X, Qu J, Gong F, Han Y, et al. Epidemiological and clinical characteristics of 99 cases of 2019 novel coronavirus pneumonia in Wuhan, China: A descriptive study. Lancet 2020; 395(10223): 507-13.
- Dehnavieh R, Haghdoost A, Khosravi A, Hoseinabadi F, Rahimi H, Poursheikhali A, et al. The District Health Information System (DHIS2): A literature review and meta-synthesis of its strengths and operational challenges based on the experiences of 11 countries. Health Inf Manag 2019; 48(2): 62-75.
- Peeters LM, Parciak T, Walton C, Geys L, Moreau Y, De Brouwer E, et al. COVID-19 in people with multiple sclerosis: A global data sharing initiative. Mult Scler 2020; 26(10): 1157-62.
- Louapre C, Collongues N, Stankoff B, Giannesini C, Papeix C, Bensa C, et al. Clinical characteristics and outcomes in patients with coronavirus disease 2019 and multiple sclerosis. JAMA Neurol 2020; 77(9): 1079-88.
- Weeks J. Call to Action: Announcing the traditional, complementary and integrative health and medicine COVID-19 support registry. J Altern Complement Med 2020; 26(4): 256-8.
- Linschoten M, Asselbergs FW. CAPACITY-COVID: A European Registry to determine the role of cardiovascular disease in the COVID-19 pandemic. Eur Heart J 2020; 41(19): 1795-6.