| Item | Content |
|---|---|
| Research project name | Research Project on the Rare / Intractable Disease |
| Study title | Study group for rare intractable myopathy |
| Name of principal investigator | Masahi Aoki |
| Name of institution of the principal investigator | Tohoku University Graduate school of Medicine |
| Target disease | GNE myopathy |
| Registry name | REMUDY |
| 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 |
| Overview of registry | |
| Research item | Information about the current medical institutions of patients, Past medical history, History of present illness |
| Contact | |
| E-mail address | |
| Registry URL | http://www.remudy.jp/info/ |
* If the E-mail address is shown, replace "●" with "@", please.