| Item | Content |
|---|---|
| Research project name | Research Project on the Rare / Intractable Disease |
| Study title | Study on diagnosis and treatment of Moyamoya disease (occlusion of the Circle of Willis) |
| Name of principal investigator | Kiyohiro Houkin |
| Name of institution of the principal investigator | Hokkaido University / Hokkaido University Hospital |
| Target disease | Moyamoya disease |
| Registry name | Japan Moyamoya Registry |
| Purpose of registry | Survey of natural history, Investigation into the number or the distribution of patients, Epidemiological study, Patient recruitment for clinical trials or other interventional studies, Sample collection, Investigation of biomarkers, Genetic analysis study |
| Overview of registry | This registry is conducted as a part of the MHLW Research Project on the Rare / Intractable Disease “Research of diagnosis and treatment of Moyamoya disease (occlusion of the circle of Willis)” and Practical Research Project for Rare / Intractable Diseases “a comprehensive study on establishment of evidence to improve the quality of medical care of Moyamoya disease.” The objective of the study is to establish the registry system of the common cerebrovascular disease in Japanese patients, Moyamoya disease. The primary objectives are to clarify the natural history of varied clinical phenotypes and investigate the involvement of environmental and genetic factors in onset, progression, and outcome. |
| Research item | Sex, Date of birth, Information about the current medical institutions of patients, Place of birth, Family history, Past medical history, Complication, History of present illness, History of treatment, Degree of severity, Clinical course, ADL, QOL, Functional prognosis, Prognosis, Cause of death |
| Contact | Ken Kazumata |
| E-mail address | moyamoya●pop.med.hokudai.ac.jp |
| Registry URL | https://www.crmic-huhp.jp/moyamoyareg/edc/ |
* If the E-mail address is shown, replace "●" with "@", please.