RECRUITING

Amyotrophic Lateral Sclerosis (ALS) Families Project

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

Amyotrophic Lateral Sclerosis (ALS) Families Project

Quick Facts

Study Start:2018-09-11
Study Completion:2024-09
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03865420

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.

Ages Eligible for Study:18 Years to 105 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Men or women of any race or ethnicity aged 18 or older
  2. * No symptoms of ALS or fronto-temporal dementia at enrollment
  3. * 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.
  4. * Willing to undergo genetic testing with option of whether or not to learn results
  5. * Willing to travel to Columbia University Irving Medical Center (CUIMC) every 6-24 months for study procedures
  6. * Capable of providing informed consent and following study procedures, or has a legally authorized representative who is able to consent for the subject.
  1. * Known HIV
  2. * Known hepatitis B
  3. * Known hepatitis C

Contacts and Locations

Study Contact

Elizabeth Harrington, MS, CGC
CONTACT
347-852-5315
ALSFamiliesProject@cumc.columbia.edu
Matthew Harms, MD
CONTACT

Principal Investigator

Matthew Harms, MD
PRINCIPAL_INVESTIGATOR
Columbia University

Study Locations (Sites)

Columbia University
New York, New York, 10032
United States

Collaborators and Investigators

Sponsor: Columbia University

  • Matthew Harms, MD, PRINCIPAL_INVESTIGATOR, Columbia University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2018-09-11
Study Completion Date2024-09

Study Record Updates

Study Start Date2018-09-11
Study Completion Date2024-09

Terms related to this study

Keywords Provided by Researchers

  • Pre-symptomatic
  • Familial
  • FALS
  • Genetic testing
  • C9orf72
  • SOD1
  • TARDBP
  • FUS
  • VCP
  • PFN1

Additional Relevant MeSH Terms

  • ALS