| Item | Content |
|---|---|
| Research project name | Research Project on the Rare / Intractable Disease |
| Study title | Study on rare epilepsy |
| Name of principal investigator | Yushi Inoue |
| Name of institution of the principal investigator | Division of Clinical Research, National Epilepsy Center Shizuoka Institute of Epilepsy and Neurological Disorders |
| Target disease | Epilepsy |
| Registry name | Registry of rare epilepsy syndrome (RES-R) |
| Purpose of registry | Investigation into the number or the distribution of patients, Epidemiological study, Patient recruitment for clinical trials or other interventional studies, Application as a control group in clinical trials, Others (improvement of diagnostic accuracy and cooperation with bridging between basic and clinical practice by linking with the key station of genetic analysis and pathological diagnosis registry of surgical specimens) |
| Overview of registry | The objectives of this study are to establish a registry for rare epilepsy syndromes and its causative conditions, collect cases nationwide, and obtain epidemiological bases on pathology, developmental and comorbid disorders, therapeutic responses, and social life conditions of rare intractable epilepsy in Japan by a follow-up survey. |
| Research item | Sex, Date of birth, Place of birth, Situation of public financial support, Situation of specific disease medical support, Complication, History of present illness, History of treatment, Laboratory data, Degree of severity, Clinical course, ADL, Functional prognosis, Prognosis, Cause of death, Others (initial of the name, presence of twins) |
| Contact | Yushi Inoue |
| E-mail address | contact●res-r.com |
| Registry URL | http://www.res-r.com |
* If the E-mail address is shown, replace "●" with "@", please.