| Item | Content |
|---|---|
| Research project name | Research Project on the Rare / Intractable Disease |
| Study title | Preparation of practice guidelines for HAM and HTLV 1-positive refractory diseases based on international consensus |
| Name of principal investigator | Yoshihisa Yamano |
| Name of institution of the principal investigator | Department of Advanced Medical Innovation, Graduate School of Medicine, St. Marianna University School of Medicine |
| Target disease | HTLV-1 associated myelopathy (HAM) |
| Registry name | HAM net |
| 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, Sample collection, Investigation of biomarkers, Genetic analysis study, Provision of information to registered patients, Provision of information to physicians in charge |
| Overview of registry | - Collection of epidemiological information (patient distribution, patient’s living environment and living conditions, natural history, disease type, prognostic factors, prognosis, history of treatment) on HAM - Recruitment of subjects for a clinical trial on HAM - Basis of information dissemination to HAM patients - Collection of candidate data and bioresource of clinical indicators of HAM - Consideration of the appropriateness of the clinical indicators based on the collected data・Prognostic markerIdentification of surrogate markers |
| Research item | Name, Sex, Date of birth, Address, Contact (TEL, FAX, e-mail address, etc.), Information about the current medical institutions of patients, Place of birth, Occupation, Income, Situation of public financial support, Situation of specific disease medical support, 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 | Naoko Yagishita |
| E-mail address | info●hamtsp-net.com |
| Registry URL | http://hamtsp-net.com/ |
* If the E-mail address is shown, replace "●" with "@", please.