Experience in designing an electronic multiple sclerosis registry
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.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2020 |
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| Erschienen: |
2020 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:120 |
|---|---|
| Enthalten in: |
Zhurnal nevrologii i psikhiatrii imeni S.S. Korsakova - 120(2020), 7. Vyp. 2 vom: 25., Seite 77-82 |
| Sprache: |
Russisch |
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| Weiterer Titel: |
Opyt sozdaniya elektronnogo registra patsientov s rasseyannym sklerozom |
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| Beteiligte Personen: |
Kochergin, I A [VerfasserIn] |
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| Links: |
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| Themen: |
Clinical registries |
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| Anmerkungen: |
Date Completed 17.09.2020 Date Revised 17.09.2020 published: Print Citation Status MEDLINE |
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| doi: |
10.17116/jnevro202012007277 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM314179763 |
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| 245 | 1 | 0 | |a Experience in designing an electronic multiple sclerosis registry |
| 246 | 3 | 3 | |a Opyt sozdaniya elektronnogo registra patsientov s rasseyannym sklerozom |
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| 500 | |a Date Completed 17.09.2020 | ||
| 500 | |a Date Revised 17.09.2020 | ||
| 500 | |a published: Print | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a OBJECTIVE: To develop an electronic registry of patients with MS in the Russian Federation and to analyze the collected epidemiological and clinical data | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
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| 700 | 1 | |a Zakharova, M N |e verfasserin |4 aut | |
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