Item | Content |
---|---|
Research project name | Practical Research Project for Rare / Intractable Diseases |
Study title | Establishment and operation of the database of cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) |
Name of principal investigator | Hidekazu Tomimoto |
Name of institution of the principal investigator | Department of Neurology, Mie University Graduate School of Medicine |
Target disease | CADASIL |
Registry name | Establishment and operation of the database of cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) |
Purpose of registry | Survey of natural history, Investigation into the number or the distribution of patients, Patient recruitment for clinical trials or other interventional studies, Sample collection, Investigation of biomarkers, Provision of information to registered patients |
Overview of registry | Web registration with the EDC system (RED Cap) of the National Cerebral and Cardiovascular Center will be used. All data registration will be anonymized and shared. Since CADASIL is a rare disease, the target sample size is set at 100 and the enrolment period is set at three years (June 1, 2015 to March 31, 2017). |
Research item | Name, Sex, Date of birth, Laboratory data, Degree of severity, Functional prognosis |
Contact | Yuki Yanagida, Kenichi Tabei, Akihiro Shindo |
E-mail address | cadasil●clin.medic.mie-u.ac.jp |
Registry URL | http://square.umin.ac.jp/cadasil/ |
* If the E-mail address is shown, replace "●" with "@", please.