ALS Families Project
ALS Families Project
Sponsor: Project ALS
Enrolling: Male and Female Patients
IRB Number: AAAR7275
U.S. Govt. ID: NCT03865420
Contact: Elizabeth Harrington: 347-852-5315 /
Additional Study Information: This program provides family members of individuals with familial ALS the opportunity to contribute to research focused on learning more about why motor neuron degeneration begins and how or why it progresses. This study provides genetic counseling and testing to help participants understand and manage their risk and determine if they want to learn their genetic status. This study will follow unaffected ALS gene mutation carriers on an annual basis to gather essential information that will ultimately help researchers develop novel therapies for the prevention and treatment of ALS. The ALS Families Project is divided into two sub-studies. The first, sub-study 1, offers genetic counseling and testing for individuals who want to learn their genetic status. The second, sub-study 2, involves annual follow-up visits to collect clinical information and biospecimen samples. If you do not want to learn your genetic result but still want to contribute to the research, you can participate in sub-study 2 and remain blinded to your genetic results.
Matthew Harms, MD
Do You Qualify?
Do you carry a mutation in a gene known to cause amyotrophic lateral sclerosis? Yes No
Are you able and willing to travel to Columbia at least annually to participate? Yes No
Are you willing to have your genome sequenced and shared with other researchers? Yes No
You may be eligible for this study

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For more information, please contact:
Elizabeth Harrington