| Item | Content |
|---|
| Research project name |
Practical Research Project for Rare / Intractable Diseases |
| Study title |
“Development of innovative treatment for neuromuscular system degeneration of spinal and bulbar atrophy“ |
| Name of principal investigator |
Masahisa Katsuno |
| Name of institution of the principal investigator |
Nagoya University Graduate School of Medicine |
| Target disease |
Spinal and bulbar muscular atrophy, amyotrophic lateral sclerosis |
| Registry name |
Registry for analysis of neuromuscular disease biomarkers |
| Purpose of registry |
Survey of natural history, Patient recruitment for clinical trials or other interventional studies, Application as a control group in clinical trials, Investigation of biomarkers, Provision of information to registered patients
|
| Overview of registry |
This registry investigates and identifies biomarkers by assessment of objective indices in patients with neuromuscular diseases and analysis of correlation with the neurological function and the degree of severity of subjective symptoms. It also collects data on physical examinations of subjects and analyzes correlation between the changes from pre-symptomatic conditions and disease progression for the test items including serum creatinine. In addition, it compares between some preserved samples from the subjects (blood and urine) and the samples obtained from model animal studies, and investigate items showing comparable changes in human and model animals.
|
| Research item |
Name, Sex, Date of birth, Address, Contact (TEL, FAX, e-mail address, etc.), Information about the current medical institutions of patients, 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 |
Neurological Clinical Study Group, Nagoya University |
| E-mail address |
sbma●med.nagoya-u.ac.jp |
| Registry URL |
|
* If the E-mail address is shown, replace "●" with "@", please.
