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[Experience in designing an electronic multiple sclerosis registry]
I A Kochergin1, A A Abramova1, M N Zakharova1
1Research Center of Neurology, Moscow, Russia.
Zhurnal Nevrologii I Psikhiatrii Imeni S.S. Korsakova
|August 27, 2020
Summary
An electronic registry for multiple sclerosis (MS) patients in Russia was created, analyzing data from 2728 individuals. Findings highlight diagnostic delays and delayed treatment, impacting disease progression and disability.
Area of Science:
- Neurology
- Epidemiology
- Medical Informatics
Background:
- Multiple sclerosis (MS) presents a significant neurological challenge globally.
- Understanding the epidemiology and clinical course of MS in diverse populations is crucial for effective management.
- The Russian Federation lacked a comprehensive electronic registry for MS patients.
Purpose of the Study:
- To establish an electronic registry for patients diagnosed with multiple sclerosis (MS) within the Russian Federation.
- To collect and analyze epidemiological and clinical data from MS patients.
- To identify potential challenges in MS diagnosis and treatment initiation.
Main Methods:
- Development of a specialized electronic individual registration form (registry).
- Inclusion of patients aged 18 and older with a definite diagnosis of multiple sclerosis.
- Data collection period: September 25, 2017, to March 25, 2020.
Main Results:
- Information was collected on 2728 patients with multiple sclerosis.
- Analysis included demographic, clinical, and epidemiological characteristics.
- Key findings revealed issues with primary MS diagnosis and delayed initiation of disease-modifying therapy.
Conclusions:
- The developed registry provides valuable insights into MS patient characteristics in Russia.
- Delayed diagnosis and treatment initiation are significant factors contributing to disease progression.
- These delays correlate with increased disability and transition to secondary progressive MS.
