Preparation of practice guidelines and promotion of clinical study on Kii ALS/PDC

Item	Content
Research project name	Practical Research Project for Rare / Intractable Diseases
Study title	Preparation of practice guidelines and promotion of clinical study on Kii ALS/PDC
Name of principal investigator	Yasumasa Kokubo
Name of institution of the principal investigator	Graduate School of Regional Innovation Studies, Mie University
Target disease	Kii ALS/PDC
Registry name	Kii ALS/PDC registry
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, Sample collection, Investigation of biomarkers, Genetic analysis study, Provision of information to registered patients, Provision of information to physicians in charge
Overview of registry	This registry registers the information on patients in the three major areas of ALS/PDC, the Kii Peninsula, Guam and Papua province.
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, 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
E-mail address	kii-project●clin.medic.mie-u.ac.jp
Registry URL	http://kii-als-pdc-project.com/research_project.html

* If the E-mail address is shown, replace "●" with "@", please.