| Item | Content |
|---|---|
| Research project name | Practical Research Project for Rare / Intractable Diseases |
| Study title | Study on natural history of multiple system atrophy and its modifiers |
| Name of principal investigator | Hidenao Sasaki |
| Name of institution of the principal investigator | Faculty of Medicine and Graduate School of Medicine, Hokkaido University |
| Target disease | Multiple system atrophy |
| Registry name | HoRC-MSA |
| Purpose of registry | Survey of natural history, Epidemiological study, Patient recruitment for clinical trials or other interventional studies, Application as a control group in clinical trials, Sample collection, Investigation of biomarkers, Genetic analysis study, Provision of information to registered patients |
| Overview of registry | To survey patients who were diagnosed by a specialist regarding their intention to participate in the study. To survey clinical information such as the scale for degree of severity once a year, upon informed consent. To preserve plasma and genomic DNA upon informed consent. To distribute a newsletter to registered patients once a year. To hold joint medical lectures with the patient’s association for patients and their families in Hokkaido. |
| Research item | Name, Sex, Date of birth, Address, Contact (TEL, FAX, e-mail address, etc.), Information about the current medical institutions of patients, Degree of severity, Clinical course, ADL, Prognosis |
| Contact | Masaaki Matsushima, Hidenao Sasaki (principal investigator) |
| E-mail address | h-isasak●med.hokudai.ac.jp |
| Registry URL | http://neurology.med.hokudai.ac.jp/~neuro-w/horc-msa/ |
* If the E-mail address is shown, replace "●" with "@", please.