NCT03865420Recruiting
Amyotrophic Lateral Sclerosis (ALS) Families Project
Source: ClinicalTrials.gov · Last updated 7 Jan 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 300 (estimated)
- First submitted
- 25 Feb 2019
- Start date
- 11 Sept 2018
- Primary completion date
- Jan 2027
- Lead sponsor
- Columbia University
- Diseases
- ALS (motor neurone disease)
- NCT number
- NCT03865420
What you commit to
- Study type: Observational
- Planned participants: 300
- From 11 Sept 2018 to the primary completion date, Jan 2027
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study design.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Known HIV
- Known hepatitis B
- Known hepatitis C
Who the study is looking for
- 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.
Age in the registry: 18 years to 105 years · Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Save your city in your profile to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Columbia University Coordinator of this site? Confirm its status | New York | United States | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.