RecruitingNCT03865420

Amyotrophic Lateral Sclerosis (ALS) Families Project

Sponsor

Columbia University

Enrollment

300 participants

Start Date

Sep 11, 2018

Study Type

OBSERVATIONAL

Conditions

ALS

Summary

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.

Eligibility

Min Age: 18 YearsMax Age: 105 Years

Inclusion Criteria9

Men or women of any race or ethnicity aged 18 or older
No symptoms of ALS or fronto-temporal dementia at enrollment
Scenario 1: has already had genetic testing that identified an ALS-spectrum gene mutation.
Scenario 2: has a first degree relative who was/is an obligate carrier of a familial ALS-spectrum gene mutation.
Scenario 3: has a first degree relative who has/had an ALS-spectrum diagnosis who had a confirmed ALS-spectrum gene mutation or comes from a family with a high burden of ALS-spectrum diagnoses and a known ALS-spectrum gene mutation.
Scenario 4: is deemed to be at high risk for carrying an ALS-spectrum gene mutation as judged by a review of the family structure and genetic information by the study team.
Willing to undergo genetic analysis, with option of whether or not to learn results
Willing to travel to Columbia University Irving Medical Center (CUIMC) every 6-24 months for study procedures
Capable of providing informed consent and following study procedures, or has a legally authorized representative who is able to consent for the subject.