Phase
Condition
Amyotrophic Lateral Sclerosis (Als)
Scar Tissue
Myasthenia Gravis (Chronic Weakness)
Treatment
N/AClinical Study ID
Ages > 18 All Genders
Study Summary
Eligibility Criteria
Inclusion
Inclusion Criteria:
Age 18 years or older
Capable of providing informed consent
Willing to follow study procedures
First-degree relative of a known carrier of any ALS causative gene1 (regardless ofwhether ALS or FTD has actually been symptomatic in the family) OR First-degreerelative of an individual with ALS and/or FTD in a family with a "compelling familyhistory" of ALS/FTD, regardless of whether genetic testing has occurred insymptomatic family members. A "compelling family history" is defined as a pedigreewith at least 2 close relatives who had ALS or FTD, with at least one of thosefamily members having had ALS.
Access to a smartphone, computer, or tablet, and internet (need not be in the home -access to a public library or other available computer with internet connection issufficient)
Exclusion
Exclusion Criteria:
Evidence of neurological signs or symptoms concerning for ALS of FTD, at thediscretion of the site investigator which will be communicated to the applicantalong with referral for appropriate clinical follow-up.
Significant cognitive impairment, clinical dementia, or unstable psychiatricillness, including psychosis, active suicidal ideation, suicide attempt, oruntreated major depression <= 90 days (about 3 months) of screening, which in theopinion of the Investigator would interfere with the study procedures
Clinically significant, unstable medical condition (e.g., cardiovascularinstability, systemic infection, untreated thyroid dysfunction, malignant andpotentially progressive cancer) that would render the participant unlikely to beable to complete 12 months of follow-up, according to Investigator's judgment
Exclusion Criteria for Participants Undergoing Optional Lumbar Puncture
Medically unable to undergo lumbar puncture (LP) as determined by the siteinvestigator (i.e., bleeding disorder, a skin infection at or near the LP site,known or suspected intracranial or intraspinal tumor or other cause of increasedintracranial pressure).
Allergy to Lidocaine or other local anesthetic agents.
Use of anticoagulant medication or antiplatelet medications (aside from aspirin 81mg) that cannot be safely withheld prior to lumbar puncture.
Blood dyscrasia, abnormal bleeding diathesis, or the use of dialysis for renalfailure.
Current pregnancy based on participant self-report
Clinical judgement of the site investigator that the participant would be unable toundergo multiple lumbar punctures.
Inclusion Criteria for Genetic Testing Results Sub-study
Age 18 years of age or older
Capable of providing informed consent
Willing to follow study procedures
Currently enrolled in the PREVENT ALS Study
Study Design
Connect with a study center
CHALS-CCT, University of Puerto Rico, Medical Sciences Campus
San Juan, 00935
Puerto RicoActive - Recruiting
University of Alabama Birmingham
Birmingham, Alabama 35294
United StatesActive - Recruiting
Barrow Neurological Institute
Phoenix, Arizona 85013
United StatesActive - Recruiting
University of California San Diego
La Jolla, California 92037
United StatesActive - Recruiting
University of California Irvine
Orange, California 92868
United StatesActive - Recruiting
University of California, San Francisco
San Francisco, California 94143
United StatesActive - Recruiting
University of Colorado Anschutz Medical Campus
Aurora, Colorado 80045
United StatesActive - Recruiting
Hospital for Special Care
New Britain, Connecticut 06053
United StatesActive - Recruiting
Georgetown University
Washington, District of Columbia 200007
United StatesActive - Recruiting
Mayo Clinic
Jacksonville, Florida 32224
United StatesActive - Recruiting
Saint Alphonsus Regional Medical Center
Boise, Idaho 83704
United StatesActive - Recruiting
Northwestern University
Chicago, Illinois 60611
United StatesActive - Recruiting
Indiana University
Indianapolis, Indiana 46202
United StatesActive - Recruiting
John Hopkins University
Baltimore, Maryland 21205
United StatesActive - Recruiting
Nih/Ninds
Bethesda, Maryland 20892
United StatesActive - Recruiting
Massachusetts General Brigham
Boston, Massachusetts 02145
United StatesActive - Recruiting
University of Michigan
Ann Arbor, Michigan 48109
United StatesActive - Recruiting
Henry Ford Health
Detroit, Michigan 48202
United StatesActive - Recruiting
University of Minnesota
Minneapolis, Minnesota 55455
United StatesActive - Recruiting
Washington University
Saint Louis, Missouri 63110
United StatesActive - Recruiting
University of Nebraska Medical Center
Omaha, Nebraska 68198
United StatesActive - Recruiting
Dartmouth Hitchcock Medical Center
Lebanon, New Hampshire 03756
United StatesActive - Recruiting
Columbia University
New York, New York 10032
United StatesActive - Recruiting
Duke University
Durham, North Carolina 27705
United StatesActive - Recruiting
Ohio State University
Columbus, Ohio 43221
United StatesActive - Recruiting
Providence ALS Center
Portland, Oregon 97213
United StatesActive - Recruiting
Penn State Health
Hershey, Pennsylvania 17033
United StatesActive - Recruiting
Temple University
Philadelphia, Pennsylvania 19140
United StatesActive - Recruiting
Texas Neurology
Dallas, Texas 75206
United StatesActive - Recruiting
University of Utah
Salt Lake City, Utah 84132
United StatesActive - Recruiting
Virginia Commonwealth University
Richmond, Virginia 23298
United StatesActive - Recruiting
University of Washington
Seattle, Washington 98195
United StatesActive - Recruiting


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