| Item | Content |
|---|---|
| Research project name | Research Project on the Rare / Intractable Disease |
| Study title | Study on establishment of diagnostic criteria, classification of degree of severity and practice guidelines for primary immunodeficiency diseases |
| Name of principal investigator | Shigeaki Nonoyama |
| Name of institution of the principal investigator | Department of Pediatrics, National Defense Medical College |
| Target disease | Primary immunodeficiency diseases |
| Registry name | Primary Immunodeficiency Database in Japan (PIDJ) |
| Purpose of registry | Sample collection, Investigation of biomarkers, Genetic analysis study, Provision of information to registered patients, Provision of information to physicians in charge |
| Overview of registry | The information on clinical symptoms, data, family history, past medical history, history of infection, clinical course, treatment, prognosis, FACS analysis results, functional analysis results and genetic analysis results of patients with primary immunodeficiency syndrome are stored. Each information is sortable by item and stored in a data extractable format. The detailed information is queryable since contacts of the physicians in charge are also listed. Biological samples are also preserved. |
| Research item | Sex, Date of birth, Address, Contact (TEL, FAX, e-mail address, etc.), Information about the current medical institutions of patients, Place of birth, Family history, Past medical history, Complication, History of present illness, History of treatment, Laboratory data, Degree of severity, Clinical course, ADL, QOL, Functional prognosis, Prognosis, Cause of death |
| Contact | |
| E-mail address | |
| Registry URL | http://pidj.rcai.riken.jp/ |
* If the E-mail address is shown, replace "●" with "@", please.