| Item | Content |
|---|---|
| Research project name | Practical Research Project for Rare / Intractable Diseases |
| Study title | Japan Primary Aldosteronism Study (JPAS) |
| Name of principal investigator | Mitsuhide Naruse |
| Name of institution of the principal investigator | Clinical Research Institute for Endocrine and Metabolic Diseases, National Hospital Organization Kyoto Medical Center |
| Target disease | Primary aldosteronism (only cases with adrenal vein sampling data) |
| Registry name | PA registry |
| 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, Application as a control group in clinical trials, Application for post-marketing surveillance, Sample collection, Investigation of biomarkers, Genetic analysis study, Provision of information to registered patients, Others (globalization of intractable disease measures, especially the roles of platform of intractable disease measures and researches in Asia are under consideration) |
| Overview of registry | Collection and registration of patient’s medical information are conducted online through the communication system. Development of the system, security and maintenance of the registered data will be handled by EP‐CRSU Co., Ltd. (and EPS Corporation), and encryption of the data, introduction of a firewall and storage of data will be conducted sequentially. |
| Research item | Sex, Family history, Past medical history, Complication, History of present illness, History of treatment, Laboratory data, Degree of severity, Clinical course, QOL, Functional prognosis, Prognosis, Cause of death |
| Contact | Mitsuhide Naruse |
| E-mail address | japan.pa.registry●gmail.com |
| Registry URL | http://www.adrenal.jp |
* If the E-mail address is shown, replace "●" with "@", please.