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Status:

RECRUITING

Amyotrophic Lateral Sclerosis (ALS) Families Project

Lead Sponsor:

Columbia University

Conditions:

ALS

Eligibility:

All Genders

18-105 years

Brief 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 pr...

Detailed Description

Approximately 10% of people with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's Disease, have a family history of ALS or a related condition called frontotemporal dementia (FTD). In most of thes...

Eligibility Criteria

Inclusion

  • Inclusion Criteria:
  • 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.
  • Exclusion Criteria for participation in biosample portion of the study:
  • Known HIV
  • Known hepatitis B
  • Known hepatitis C

Exclusion

    Key Trial Info

    Start Date :

    September 11 2018

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ESTIMATED

    End Date :

    January 1 2027

    Estimated Enrollment :

    300 Patients enrolled

    Trial Details

    Trial ID

    NCT03865420

    Start Date

    September 11 2018

    End Date

    January 1 2027

    Last Update

    January 7 2026

    Active Locations (1)

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    Page 1 of 1 (1 locations)

    1

    Columbia University

    New York, New York, United States, 10032