Objective: To investigate the epidemiological aspects of multiple system atrophy (MSA) in Hokkaido, Japan by using the Hokkaido Rare disease Consortium for MSA (HoRC-MSA).

Background:

MSA is a rapidly progressive neurodegenerative disease and novel treatments can be expected in the future. In clinical trials, a sufficient number of patients and appropriate outcome measures will be needed. We are currently creating a patient registry to investigate the natural history of MSA in preparation for clinical trials.

Methods: We started recruitment of MSA patients in Hokkaido after approval from the Institutional review board of Hokkaido University Hospital in November 2014. This regional registry is based on the national registry data. Postal surveys to medical facilities and MSA patients were conducted.

Results:

Thus far, a total of 168 MSA patients took part in this study. Diagnostic criteria were examined for 130 patients until October 31, 2016. Sixty patients were evaluated by clinical assessment scales. Ninety-nine patients changed medical facilities. More than half moved to long-term care facilities. Eighty-seven patients died at the time of investigation.

Conclusions: A survey using HoRC-MSA provided novel epidemiological knowledge for MSA. We will continue to conduct this prospective cohort study.

« Back to 2017 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/a-registry-study-of-multiple-system-atrophy-in-hokkaido-japan-horc-msa-project-2014-16/