| Item | Content |
|---|
| Research project name |
Research Project on the Rare / Intractable Disease |
| Study title |
Study on idiopathic hematopoietic disorders |
| Name of principal investigator |
Kinuko Mitani |
| Name of institution of the principal investigator |
Dokkyo Medical University School of Medicine |
| Target disease |
Aplastic anemia, myelodysplastic syndrome, nondiagnostic cytopenia |
| Registry name |
Prospective case registration, central review and follow-up study on aplastic anemia and myelodysplastic syndrome |
| Purpose of registry |
Survey of natural history, Epidemiological study,Others ([1] Objectives of central review(1) To reach a diagnostic consensus as the “study group for idiopathic hematopoietic disorders” in the prospective treatment study.(2) To prepare internationally acceptable criteria for dysplasia and clarify the diagnostic criteria for aplastic anemia and MDS.[2] Objectives of prospective case registration and follow-up study(1) To understand the reality of aplastic anemia and myelodysplastic syndrome, and the outcome of each treatment in Japan(2) To utilize as the basic data for development of new treatment and its introduction)
|
| Overview of registry |
More than 360 cases have been registered from participating institutions nationwide since 2006. For the cases with the proportion of myeloblasts of < 5%, bone marrow, peripheral blood smear, and pathological specimens of the patients are sent at registration for central diagnosis. The database for the follow-up study has been established based on the clinical information of the registered cases sent every six months.
|
| Research item |
Sex, Date of birth, History of treatment, Laboratory data, Degree of severity, Clinical course, Cause of death
|
| Contact |
|
| E-mail address |
aamds●kuhp.kyoto-u.ac.jp |
| Registry URL |
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* If the E-mail address is shown, replace "●" with "@", please.
