Experience in designing an electronic multiple sclerosis registry

Kochergin I.A.; Abramova A.A.; Zakharova M.N.

doi:https://doi.org/10.17116/jnevro202012007277

Kochergin I.A.

Research Center of Neurology

Abramova A.A.

Research Center of Neurology

Zakharova M.N.

Research Center of Neurology

SPIN RSCI: 4277-2860
Scopus AuthorID: 7006679636
ResearcherID: C-4611-2012
ORCID: 0000-0002-1072-9968

Experience in designing an electronic multiple sclerosis registry

Authors:

Kochergin I.A., Abramova A.A., Zakharova M.N.

More about the authors

Journal: S.S. Korsakov Journal of Neurology and Psychiatry. 2020;120(7‑2): 77‑82

DOI: 10.17116/jnevro202012007277

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To cite this article:

Kochergin IA, Abramova AA, Zakharova MN. Experience in designing an electronic multiple sclerosis registry. S.S. Korsakov Journal of Neurology and Psychiatry. 2020;120(7‑2):77‑82. (In Russ.)
https://doi.org/10.17116/jnevro202012007277

Подписка 2026 Журнал неврологии и психиатрии им. С.С. Корсакова. Спецвыпуски (S.S. Korsakov Journal of Neurology and Psychiatry (special issues))

Использование инфографики авторами научных работ

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OBJECTIVE

To develop an electronic registry of patients with MS in the Russian Federation and to analyze the collected epidemiological and clinical data.

MATERIALS AND METHODS

Patients aged 18 and older with definite multiple sclerosis were included in the study. We designed a specialized electronic individual registration form (registry) to gather information about study participants. This paper presents data collected in the project between September 25, 2017 and March 25, 2020.

RESULTS

We collected information on 2728 patients. This paper presents the results of data analysis from the registry of MS patients, including demographic, clinical and epidemiological characteristics, the type and timing of treatment received. Based on the data obtained, certain issues with primary diagnosis of multiple sclerosis and delayed initiation of disease-modifying therapy can be highlighted, which contribute to the transition of the disease to a secondary progressive course and disability increase.

Keywords:

multiple sclerosis

clinical registries

epidemiology

DMTs

Authors:

Kochergin I.A.

Research Center of Neurology

Abramova A.A.

Research Center of Neurology

Zakharova M.N.

Research Center of Neurology

SPIN RSCI: 4277-2860
Scopus AuthorID: 7006679636
ResearcherID: C-4611-2012
ORCID: 0000-0002-1072-9968

Received:

14.05.2020

Accepted:

01.06.2020

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References:

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