PREVENT ALL ALS Study
Start Date
7/25/2024
Completion Date
7/25/2029
Summary
The ALL ALS Clinical Research Consortium is establishing research to collect a wide range of samples, clinical information and measurements from Amyotrophic Lateral Sclerosis (ALS) symptomatic, ALS gene carriers and control cohorts. This consortium is begin funded by the National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS) and managed by two clinical coordinating centers (CCC) at Barrow Neurological Institute and Massachusetts General Hospital. The clinical sites are distributed across the country, and led by a group of collaborative principal investigators. Once data and samples are collected and harmonized, it will be made available to research community for future research into ALS and related neurological diseases. PREVENT protocol is specific for asymptomatic participants who are genetically at risk for ALS. The participants will be followed for up to 36 months (3 years), and will include 4 in-person on-site visits once a year and 6 off-site(remote) visits once in 4 months. The study includes collection of medical history, clinical outcomes, and blood samples once in 4 months. Additionally, the participants will complete patient reported outcomes and speech recordings once in 4 months. Participants may also provide optional Cerebrospinal Fluid (CSF) samples.The participants may also opt into a sub-study if they are interested in genetic testing for ALS causative genes. The sub-study will involve a minimum of 3 visits over a course of 2-3 months. This will include a screening/pre-test genetic counseling visit, a return of genetic results and a post-test counseling visit.
Eligibility Criteria
Age Range: 18 years to No maximum
Conditions
Locations
University of Alabama Birmingham
Birmingham, Alabama 35294
United States
Barrow Neurological Institute
Phoenix, Arizona 85013
United States
University of California San Diego
La Jolla, California 92037
United States
University of California Irvine
Orange, California 92868
United States
University of California, San Francisco
San Francisco, California 94143
United States
University of Colorado Anschutz Medical Campus
Aurora, Colorado 80045
United States
Hospital for Special Care
New Britain, Connecticut 06053
United States
Georgetown University
Washington D.C., District of Columbia 200007
United States
Mayo Clinic
Jacksonville, Florida 32224
United States
Saint Alphonsus Regional Medical Center
Boise, Idaho 83704
United States
Northwestern University
Chicago, Illinois 60611
United States
Indiana University
Indianapolis, Indiana 46202
United States
John Hopkins University
Baltimore, Maryland 21205
United States
Nih/Ninds
Bethesda, Maryland 20892
United States
Massachusetts General Brigham
Boston, Massachusetts 02145
United States
University of Michigan
Ann Arbor, Michigan 48109
United States
Henry Ford Health
Detroit, Michigan 48202
United States
University of Minnesota
Minneapolis, Minnesota 55455
United States
Washington University
St Louis, Missouri 63110
United States
University of Nebraska Medical Center
Omaha, Nebraska 68198
United States
Dartmouth Hitchcock Medical Center
Lebanon, New Hampshire 03756
United States
Columbia University
New York, New York 10032
United States
Duke University
Durham, North Carolina 27705
United States
Ohio State University
Columbus, Ohio 43221
United States
Providence ALS Center
Portland, Oregon 97213
United States
Penn State Health
Hershey, Pennsylvania 17033
United States
Temple University
Philadelphia, Pennsylvania 19140
United States
Texas Neurology
Dallas, Texas 75206
United States
University of Utah
Salt Lake City, Utah 84132
United States
Virginia Commonwealth University
Richmond, Virginia 23298
United States
University of Washington
Seattle, Washington 98195
United States
CHALS-CCT, University of Puerto Rico, Medical Sciences Campus
San Juan, Puerto Rico 00935
Puerto Rico