ECTRIMS eLearning

Organization of MS care in Russia
Author(s):
A. Boyko
A. Boyko
Affiliations:
ECTRIMS Learn. Boyko A. 09/14/16; 146937; 53
Alexey Boyko
Alexey Boyko
Contributions
Abstract

Abstract: 53

Type: Oral

MS prevalence in Russia varies from 20 to 80 cases per 100 000 population. A significant increase of MS prevalence and incidence at last 20 years was seen because of better cases ascertainment (widely use of MRI), increase of the disease duration (better MS therapy) plus real increase of MS incidence in several populations with many cases with early MS onset. No one from more than 80 ethnic groups of Russia (except the Northern tribes) is now free of MS, while MS prevalence greatly depends on ethnicity. First MS Center was organized in Moscow at 1998, at 2000 there were 5 MS Centers in Russia, at 2015 - already 58 MS Centers at all large cities of Russia. RUCTRIMS was organized in 2012, representatives from 42 regions participated. Now RUCTRIMS is registered in Russia as a non-government professional organization, Executive Committee and President are elected ones per 4 years. RUCTRIMS is cooperating with All-Russian Societies of Neurologists and Societies of Neurologists of neighboring countries, with All-Russian MS patients Society, local MS societies. Main activities of RUCTRIMS are: educational programs (2 days “MS School”) organized already at 25 cities; publications in journals and other information resources; on-line and TC consultations of severe and unusual clinical cases; coordination of MS research in MS Centers and Federal Institutes, coordination of clinical trials and open-label observational studies, control of realization of risk-management plans in every-day practice. There are several All-Russian studies of MS, coordinated by RUCTRIMS: 1) United Study of epidemiology of MS in Russia (USSR) - data from 21 cities, 1304 matched case-control pars,2) All-Russian Study of the Quality of Life of MS Patients using the MusiQoL (RuQoL) - data from 1500 of patients from 56 neurological centers receiving high dose interferons-beta-1a and 1409 of patients from 49 neurological centers receiving GA; 3) All-Russian Genetic Consortium - GWAS and association studies in different populations (1684 patients from 6 cities), pharmacogenomic studies (totally 1320 patients); 4) All-Russian observational study of the first line DMT in every-day practice - 6447 patients from 69 cities, 5) All-Russian clinico-genetic study of primary progressive MS (RuPPMS) - 157 patients from 7 cities; 6) Study of pregnancy and MS (PregMS) - 279 women from 5 cities; 7) All-Russian study of biosimilars of interferons-beta in MS - now participating 5 cities.

Disclosure: A member of Advisory Boards and participated in clinical trials sponsored by TEVA, Biogen Idec, Merck Serono, Sanofi Genzyme, Biocad, Novartis.

Abstract: 53

Type: Oral

MS prevalence in Russia varies from 20 to 80 cases per 100 000 population. A significant increase of MS prevalence and incidence at last 20 years was seen because of better cases ascertainment (widely use of MRI), increase of the disease duration (better MS therapy) plus real increase of MS incidence in several populations with many cases with early MS onset. No one from more than 80 ethnic groups of Russia (except the Northern tribes) is now free of MS, while MS prevalence greatly depends on ethnicity. First MS Center was organized in Moscow at 1998, at 2000 there were 5 MS Centers in Russia, at 2015 - already 58 MS Centers at all large cities of Russia. RUCTRIMS was organized in 2012, representatives from 42 regions participated. Now RUCTRIMS is registered in Russia as a non-government professional organization, Executive Committee and President are elected ones per 4 years. RUCTRIMS is cooperating with All-Russian Societies of Neurologists and Societies of Neurologists of neighboring countries, with All-Russian MS patients Society, local MS societies. Main activities of RUCTRIMS are: educational programs (2 days “MS School”) organized already at 25 cities; publications in journals and other information resources; on-line and TC consultations of severe and unusual clinical cases; coordination of MS research in MS Centers and Federal Institutes, coordination of clinical trials and open-label observational studies, control of realization of risk-management plans in every-day practice. There are several All-Russian studies of MS, coordinated by RUCTRIMS: 1) United Study of epidemiology of MS in Russia (USSR) - data from 21 cities, 1304 matched case-control pars,2) All-Russian Study of the Quality of Life of MS Patients using the MusiQoL (RuQoL) - data from 1500 of patients from 56 neurological centers receiving high dose interferons-beta-1a and 1409 of patients from 49 neurological centers receiving GA; 3) All-Russian Genetic Consortium - GWAS and association studies in different populations (1684 patients from 6 cities), pharmacogenomic studies (totally 1320 patients); 4) All-Russian observational study of the first line DMT in every-day practice - 6447 patients from 69 cities, 5) All-Russian clinico-genetic study of primary progressive MS (RuPPMS) - 157 patients from 7 cities; 6) Study of pregnancy and MS (PregMS) - 279 women from 5 cities; 7) All-Russian study of biosimilars of interferons-beta in MS - now participating 5 cities.

Disclosure: A member of Advisory Boards and participated in clinical trials sponsored by TEVA, Biogen Idec, Merck Serono, Sanofi Genzyme, Biocad, Novartis.

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