| Item | Content |
|---|
| Research project name |
Research Project on the Rare / Intractable Disease |
| Study title |
Study on establishment of national medical system, classification of disease severity, and clinical practice guidelines for autoinflammatory and related diseases |
| Name of principal investigator |
Toshio Heike |
| Name of institution of the principal investigator |
Graduate School of Medicine, Kyoto University |
| Target disease |
Autoinflammatory diseases |
| Registry name |
Registration system of patients with autoinflammatory diseases |
| 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, Genetic analysis study, Provision of information to registered patients, Provision of information to physicians in charge
|
| Overview of registry |
1) Development of medical system for autoinflammatory diseases, 2) promotion of patient registration system, 3) preparation of practice guidelines, and 4) preparation of classification of disease severity were conducted by the 2014-2016 “study group for establishment of diagnostic criteria, classification of disease severity and clinical practice guidelines for autoinflammatory and related diseases.” This study aims at registration of patients with autoinflammatory diseases with continuous update in the system (registry) established in the program. It also aims at developing new clinical evidence based on patients’ needs through this registry.
|
| Research item |
Sex, Date of birth, Information about the current medical institutions of patients, Family history, Past medical history, Complication, History of present illness, History of treatment, Laboratory data, Clinical course
|
| Contact |
Takahiro Yasumi |
| E-mail address |
yasumi●kuhp.kyoto-u.ac.jp |
| Registry URL |
|
* If the E-mail address is shown, replace "●" with "@", please.
