Presenting a Population-based Multiple Sclerosis Registry for Iran
Archives of Advances in Biosciences,
Vol. 10 No. 2 (2019),
15 April 2019
,
Page 18-25
https://doi.org/10.22037/aab.v10i2.24404
Abstract
Introduction: Worldwide prevalence of Multiple Sclerosis (MS) is growing, and given the huge burden on the patient, the community and the healthcare system, prevention interventions and symptom management in order to improving the quality of life of these patients are of utmost importance. One of the most important strategies in this regard is providing the existence of an MS population-based registry. Accordingly, this research was aimed at providing a population-based MS registry model.
Materials and Methods: This is a qualitative study, carried out within the years 2016 and 2017. The population of the present study consisted of models of multiple sclerosis population registries. In this study, a model was provided using library resources, informational networks and information retrieval from databases of PubMed, Google Scholar, Springer, Science direct, and Wiley and also through studying the registry of developed countries. Then, this model using Delphi technique and questionnaire tool was validated and after data analysis, the final model was presented.
Results: In the present study, a demographic MS registry model including the following eight main criteria was proposed: registry goals, data sources, minimum data set, data set, data processing, various types of reports, quality control measures and patient follow-up procedures.
Conclusion: Considering the prevalence of MS in Iran and the need for optimal data management, it is recommended that measures be taken to establish and use a national MS population-based registry and be one of the priorities of the Ministry of Health and Medical Education.
- Multiple sclerosis
- Registry
- Data management
- Population based registry
How to Cite
References
Radmehr M, Meghdadi S, Bahmanzadeh M, Sabbagh S. Prevalence, demographics and clinical characteristics of multiple sclerosis in North of Khuzestan Province, Iran. Jentashapir Journal of Health Research. 2015; 6(5).
Lassmann H, Brück W, Lucchinetti CF. The immunopathology of multiple sclerosis: an overview. Brain pathology. 2007 Apr; 17(2):210-8.
MARRIE R A. The influence of comorbid diseases and health behaviors on clinical characteristics, disability at diagnosis, and disability progression in multiple sclerosis. Case Western Reserve University, 2007.
Pugliatti M, Eskic D, Mikolcić T, PitschnauMichel D, Myhr KM, Sastre-Garriga J, Otero S, Wieczynska L, Torje C, Holloway E, Rienhoff O. Assess, compare and enhance the status of Persons with M ultiple S clerosis (MS) in E urope: a E uropean R egister for MS. Acta Neurologica Scandinavica. 2012 Dec; 126:24-30.
Motamed M, Fereshte Nejad SM, Panah K. The comparison of sex hormones and interferon's impacts on the number of relapses and the progression of disability in relapsing-remitting multiple sclerosis (RRMS). Razi Journal of Medical Sciences. 2007 Nov 15;14(56):157-64..
National multiple sclerosis society.2015."symptom and signs ". Cited [ 2015/8/7] available at: http://www.Nationalmssociety.org/symptoms-diagnosis/ms-sympt
Ghanati E, Hadiyan M, Asli AR. Economic expenditures of multiple sclerosis medications and feasibility of providing health insurance policies for medications. Journal of Health Administration (JHA). 2011;14(45).
Payamani F, Nazari AA, Noktehdan H, Ghadiriyan F, Karami K. Complementary therapy in patients with multiple sclerosis. Iran Journal of Nursing. 2012 Aug;25(77):12-20.
Khanezadeh H, Nikkhah K, Isam M, Akmal A, Ibrahim Zadeh S. Managing the Pharmaceutical Economy of Multiple Sclerosis, 8th Iranian International Congress on MS; Nov 16-17; 2011; mashhad university of medical sciences.
Asadi H, Imani-Nasab MH, Garavand A, Hasoumi M, Kia AA, Haghi B, Setoodehzadeh F. HIV Positive Patients' Experience of Receiving Health Care Services: A Phenomenology Study in Iran. The Open AIDS Journal. 2018 Oct 30; 12(1).
NEWTON J, GARNER S. Disease registers in England. Institute of Health Sciences, University of Oxford, 2002.
New York State Department of Health. Chronic Disease Teaching Tools Disease Registries. USA, 1999.
Lana-Peixoto MA, Talim LE, Faria-Campos AC, Campos SV, Rocha CF, Hanke LA, Talim N, Batista PH, Araujo CR, Kleinpaul R. Nmo-dbr: the brazilian neuromyelitis optica database system. Arquivos de neuro-psiquiatria. 2011 Aug;69(4):687-92.
Hedgecoth, J. Chronic Disease Registries. Iowa Prevention and Chronic Care Advisory Council, 2009. pp. 1-7.
Flachenecker P, Khil L, Bergmann S, Kowalewski M, Pascu I, Pérez-Miralles F, Sastre-Garriga J, Zwingers T. Development and pilot phase of a European MS register. Journal of neurology. 2010 Oct 1;257(10):1620-7.
Koch-Henriksen N, Stenager E, Laursen B. The use of epidemiological multiple sclerosis registers in research: the D anish MS R egistry. Acta Neurologica Scandinavica. 2012 Dec;126:7-12.
Gliklich RE, Dreyer NA, Leavy MB. Registries for evaluating patient outcomes: a user's guide, Rockville. MD: Agency for Healthcare Research and Quality. 2014.
Hillert J, Stawiarz L, The Swedish MS registry–clinical support tool and scientific resource. Acta Neurologica Scandinavica, 2015. 132(S199): p. 11-19
Abdelhak M. Health Information Management of a Strategic Resource, 3rd ed. Saunders Elsevier, 2007; pp: 303, 472-485
USA National Cancer Institue , Cancer Registration & Surveillance Modules. 2015 , USA, Cited [2015/05/10], Available at: https://training.seer.cancer.gov/modules_reg_surv.html
Myhr KM, Grytten N, Aarseth JH. The N orwegian M ultiple S clerosis R egistry and B iobank. Acta Neurologica Scandinavica. 2012 Dec;126:20-3.
Vollmer TL, Ni W Stanton, Hadjimichael O. The NARCOMS patient registry: a resource for investigators. International Journal of MS Care 1999; 1(1): 28-34.
Fischer, Henry H., Assessing the Impact of a Dynamic Chronic Care Registry on the Quality of Care. 2011. Cited [2015/18/10]. available at: http://web. www.ahrq.gov
European Registry Multiple Sclerosis,2014 , project of European multiple sclerosis platform. Cited [2015/21/11]. Available at: Http://www.ema.europa.eu/docs/en.../WC500153277.pdf
U.S. Department of health and human services, public health services agency for healthcare research and quality; 2007.
European Database for multiple sclerosis.2013. EDMUS project. Cited [2015/21/11]. Available at: www.edmus.org/en/proj/index.html
Anderson S, Smith K. Delmars Handbook for health information careers. U.S.A.Delmar Publisher; 1997.
Stenager E.N, Stenager E, Koch Henriksen N, Brønnum-Hansen H, Hyllested K, Jensen K ,et al. Suicide and multiple sclerosis: an epidemiological investigation. Journal of Neurology, Neurosurgery & Psychiatry 1992; 55(7): 542-545.
US Department Ot Health And Human Services. SEER Program Self Instructional Manual For Cancer Registrars , Book1: Objectives and Functions of Cancer Registries Hospital and Central (population-based),NIH Publication No.99-917;1999.
Mason K, Thygesen LC, Stenager E, Brønnum-Hansen H, Koch-Henriksen N. Evaluating the use and limitations of the Danish National Patient Register in register-based research using an example of multiple sclerosis. Acta neurologica Scandinavica. 2012 Mar;125(3):213-7.
Gliklich RE, Dreyer NA, Leavy MB, editors. Registries for evaluating patient outcomes: a user’s guide. Government Printing Office; 2014 Apr 1.
- Abstract Viewed: 262 times
- PDF Downloaded: 163 times