Amyotrophic Lateral Sclerosis (ALS) Families Project

Description

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.

Conditions

ALS

Study Overview

Study Details

Study overview

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.

Amyotrophic Lateral Sclerosis (ALS) Families Project

Amyotrophic Lateral Sclerosis (ALS) Families Project

Condition
ALS
Intervention / Treatment

-

Contacts and Locations

New York

Columbia University, New York, New York, United States, 10032

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Men or women of any race or ethnicity aged 18 or older
  • * No symptoms of ALS or fronto-temporal dementia at enrollment
  • * Have a first degree relative who had an ALS-spectrum diagnosis with a confirmed ALS-spectrum gene mutation; or already have had genetic testing and have tested positive for an ALS-spectrum gene mutation.
  • * Willing to undergo genetic testing 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.
  • * Known HIV
  • * Known hepatitis B
  • * Known hepatitis C

Ages Eligible for Study

18 Years to 105 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Columbia University,

Matthew Harms, MD, PRINCIPAL_INVESTIGATOR, Columbia University

Study Record Dates

2024-09