Introduction:
Multiple sclerosis (MS) is the most common neurologically debilitating disease among young adults. In fact, MS is a chronic disease of the central nervous system that in most patients begins with clinical attacks (recurrence). MS is generally considered an autoimmune disease and the specific cause of this disease is not known. The severity of MS varies from patient to patient and each group of patients needs different care and rehabilitation services.
An important issue in the treatment of MS is timely diagnosis and appropriate treatment and follow-up of the patient. This requires the efforts of physicians and teamwork among medical staff including neurologists, radiologists, physiotherapists, nurses, psychologists and social workers. The chronic and progressive nature of the disease causes many problems because on the one hand it increases the burden of the disease on the family and community and reduces the mental and physical function of the patient and on the other hand it makes it difficult to care and follow up for such patients.
In the meantime, the existence of a purposeful system to record, monitor and follow up this disease is essential. In addition, the possibility of accessing a huge amount of information allows management review and research studies. These facilities lead to saving large costs of patients’ treatment and extracting epidemiological statistics related to the prevalence, course and knowledge of risk factors and improving health care services to patients.
The MS disease registration system is an organized system that uses observational study methods to collect uniform data that achieve scientific, management, and clinical goals.
The NMSRI is a population registration based on a group of clinical neurologists and health care researchers. This system is a powerful resource for improving the quality of clinical care and creating a suitable environment for the quantitative and qualitative development of research related to MS.
The beneficiaries of this information registration system are MS patients, physician, pharmaceutical companies, researchers and government agencies such as the Ministry of Health and Medical Education (MOHME) and medical universities.
The NMSRI started in 2018 at the MS Research Center of Sina Hospital with the support of the MOHME.
Currently, 22 medical universities and 7 MS societies operate joined NMSRI.
Goals:
1. Estimation of standardized prevalence and incidence of the disease based on age and sex by provinces
2. Investigate the trend of changes in the prevalence and incidence of the disease over time
3. Providing the same diagnostic and treatment services in the country according to international and national standards
4. Evaluate the quality of care and the effectuality cost of health services
5. Evaluate the effectiveness of policies
6. Identification of groups at-risk
7. Determining the type of MS
8. Examining etymological hypotheses
9. Faster and more effective follow-up of patients
10. Observance of justice in the allocation and distribution of available facilities
11. Easy access to patients for providing better services
12. Awareness of the course of the disease, history and details of procedures performed for each patient
13. Record accurate intervention for each patient and identify the side effects of medications
14. Saving clinical costs
15. Continuous and accurate needs assessment
16. Research