| Item | Content |
|---|
| Research project name |
Research Project on the Rare / Intractable Disease |
| Study title |
Study on ADL improvement of patients with intractable diseases by utilization of welfare services |
| Name of principal investigator |
Reiko Fukatsu |
| Name of institution of the principal investigator |
Department of Clinical Research, National Rehabilitation Center for Persons with Disabilities |
| Target disease |
Ossification of posterior longitudinal ligament, myelomeningitis, neurofibromatosis, pigmentary retinal degeneration, lumbar spinal canal stenosis, extensive spinal canal stenosis, spastic paraplegia, Sjögren syndrome, myotonic dystrophy |
| Registry name |
Patients with intractable diseases receiving work-based welfare services |
| Purpose of registry |
Epidemiological study
|
| Overview of registry |
To assess World Health Organization Quality of Life 26 (WHOQOL26), World Health Organization Disability Assessment Schedule (WHODAS2.0) and Barthel Index (BI) within approximately two weeks after the work-related welfare service is decided and one year after start using the service.
|
| Research item |
Name, Sex, Date of birth, Situation of public financial support, ADL, QOL
|
| Contact |
|
| E-mail address |
nanbyo●rehab.go.jp |
| Registry URL |
|
* If the E-mail address is shown, replace "●" with "@", please.
