| Item | Content |
|---|
| Research project name |
Practical Research Project for Rare / Intractable Diseases |
| Study title |
Development of biomarkers and elucidation of natural history by the multicenter cohort study on progressive supranuclear palsy and related diseases |
| Name of principal investigator |
Takeshi Ikeuchi |
| Name of institution of the principal investigator |
Brain Research Institute, Niigata University |
| Target disease |
Progressive supranuclear palsy / corticobasal degeneration |
| Registry name |
JALPAC: Japanese Longitudinal Biomarker Study of PSP and CBD |
| Purpose of registry |
Survey of natural history, Epidemiological study, Patient recruitment for clinical trials or other interventional studies, Sample collection, Investigation of biomarkers, Genetic analysis study, Provision of information to physicians in charge
|
| Overview of registry |
Disease registry is being established at 41 clinical institutions nationwide as a part of the multicenter cohort study on progressive supranuclear palsy and related diseases (Japanese Longitudinal Biomarker Study in PSP and CBD: JALPAC) Clinical and image information of subjects will be collected with the common CRF (clinical record form) in all Japan framework. Enrollment of 189 patients has completed to date (July 2017). This registry follows the subjects longitudinally up to pathological diagnosis by autopsy where possible. This registry collects quality-secured biological samples, develops biomarkers, and performs gene analysis. The collection rate of biological samples remains high: genomic DNA (95%), plasma (84%), serum (99%), lymphoblast cell line (95%) and cerebrospinal fluid (70%) are managed, stored and utilized. This registry is also recognized outside Japan as one of the world’s major registries of the disease. |
| Research item |
Sex, Information about the current medical institutions of patients, Place of birth, Family history, History of present illness, History of treatment, Degree of severity, Clinical course, ADL, Functional prognosis, Prognosis, Cause of death
|
| Contact |
Takeshi Ikeuchi |
| E-mail address |
ikeuchi●bri.niigata-u.ac.jp |
| Registry URL |
|
* If the E-mail address is shown, replace "●" with "@", please.
