| Item | Content |
|---|---|
| Research project name | Practical Research Project for Rare / Intractable Diseases |
| Study title | Study on development of practice evidence of Charcot-Marie-Tooth disease and establishment of the clinical study basis |
| Name of principal investigator | Masanori Nakagawa |
| Name of institution of the principal investigator | Graduate School of Medical science, Kyoto Prefectural University of Medicine |
| Target disease | Charcot-Marie-Tooth disease |
| Registry name | CMTPR |
| Purpose of registry | Survey of natural history, Investigation into the number or the distribution of patients, Epidemiological study, Investigation of biomarkers, Provision of information to registered patients |
| Overview of registry | This is a voluntary registration system for patients with Charcot-Marie-Tooth disease or their families to register from the CMTPR website codeveloped by the study group and Fujitsu Limited. The registered contents will be confirmed by the specialists and interviews will also be conducted by curators. |
| Research item | Sex, Contact (TEL, FAX, e-mail address, etc.)Situation of public financial support, Situation of specific disease medical support, Family history, Past medical history, Complication, History of present illness, History of treatment, Degree of severity, Clinical course, ADL, Others (residential prefecture) |
| Contact | Masanori Nakagawa, Kyoto Prefectural University of Medicine |
| E-mail address | cmtgroup●koto.kpu-m.ac.jp |
| Registry URL | http://cmt-japan.com/ |
* If the E-mail address is shown, replace "●" with "@", please.