Item | Content |
---|---|
Research project name | Research Project on the Rare / Intractable Disease |
Study title | Study on healthcare infrastructure for ataxias |
Name of principal investigator | Hidehiro Mizusawa |
Name of institution of the principal investigator | National Center of Neurology and Psychiatry |
Target disease | Spinocerebellar degeneration |
Registry name | Japan Consortium of Ataxias (J-CAT) |
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, Provision of information to registered patients, Provision of information to physicians in charge |
Overview of registry | J-CAT is a registry for ataxia patients aiming to accumulate the clinical information, provide the molecular diagnosis, establish the disease-specific prospective natural history, elucidate the molecular background, and construct the repository of clinical samples including genomic DNA. |
Research item | Name, Sex, Date of birth, Address, Contact (TEL, FAX, e-mail address, etc.), Information about the current medical institutions of patients, Family history, Past medical history, Complication, History of present illness, Laboratory data, Degree of severity, Clinical course, ADL, QOL, Functional prognosis, Prognosis |
Contact | Yuji Takahashi |
E-mail address | jcat●ncnp.go.jp |
Registry URL | http://jcat.umin.ne.jp/ |
* If the E-mail address is shown, replace "●" with "@", please.