| Item | Content |
|---|
| Research project name |
Research Project on the Rare / Intractable Disease |
| Study title |
An epidemiological study on Erdheim-Chester disease |
| Name of principal investigator |
Mineo Kurokawa |
| Name of institution of the principal investigator |
Department of Hematology and Oncology, The University of Tokyo Hospital |
| Target disease |
Erdheim-Chester disease |
| Registry name |
An epidemiological study on Erdheim-Chester disease |
| Purpose of registry |
Epidemiological study, Genetic analysis study
|
| Overview of registry |
To collect clinical data on the following contents with case report forms from medical institutions providing treatment for the target patients. Anonymization ID, patient background, information in medical records (initial symptoms, time of initial visit, histopathological findings supporting the diagnosis, organ lesions, symptoms, test findings, treatment type and dose, outcome), etc.
|
| 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, Prognosis, Cause of death
|
| Contact |
Kazuhiro Toyama |
| E-mail address |
ktoyama-hok●umin.ac.jp |
| Registry URL |
|
* If the E-mail address is shown, replace "●" with "@", please.
