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The national neuromyelitis optica spectrum disorders registry system of Iran (NMORI): Aspects and methodological
Saeideh Ayoubi1, Mohammad Ali Sahraian1, Hora Heidari2
1Multiple Sclerosis Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran.
Background:
The Neuromyelitis optica spectrum disorder (NMOSD) needs a reliable standardized information registry system to support policy-makers strategy to improve quality of care. Consequently, systematic monitoring of NMOSD patients is warranted.
Objectives:
To describe aspect and strategy method of national NMOSD registry system in Iran (NMORI).
Methods:
The NMORI is a population-based registry that systemically recognizes and collects wholly NMOSD subjects' data. The system focuses on collecting inclusive and important data on the epidemiological and clinical indicators of NMOSD, this includes a set of variables: baseline characteristics, diagnosis and disease progress, treatments, laboratory findings, pregnancy & medical history, risk factors and lab data. Data are gathered from all available sources, including public and private hospitals, clinics, and neurologists' offices.
Result:
The NMORI designed in 2024 and currently includes 10 provinces across Iran. The goals of NMORI are to monitor and supervise how to treat and follow-up patients and ultimately improve the quality of care and life of subjects, reasonable allocation of treatment resources and providing scientists with novel ideas to carry out research projects. Consequently, NMORI has adopted frequent national and international collaborations aimed at addressing important health and clinical issues. A robust supervisory framework governs the scientific and systematic registry system, which operates under the oversight of four committees CONCLUSION: The NMORI system provides valuable insights into NMOSD diagnosis, care and treatment by offering comprehensive data on disease incidence, risk factors and progression. This system has capacity to increase the effectiveness of care protocols and management.
