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PREVENT ALL ALS Study

St. Joseph's Hospital and Medical Center, Phoenix · with Massachusetts General Hospital, National Institute of Neurological Disorders and Stroke (NINDS) · NCT06581861

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Ages 18+ · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
600
US sites recruiting
31
Study start
July 25, 2024
Record last updated
August 24, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

The ALL ALS Clinical Research Consortium is establishing research to collect a wide range of samples, clinical information and measurements from Amyotrophic Lateral Sclerosis (ALS) symptomatic, ALS gene carriers and control cohorts. This consortium is begin funded by the National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS) and managed by two clinical coordinating centers (CCC) at Barrow Neurological Institute and Massachusetts General Hospital. The clinical sites are distributed across the country, and led by a group of collaborative principal investigators. Once data and samples are collected and harmonized, it will be made available to research community for future research into ALS and related neurological diseases.

PREVENT protocol is specific for asymptomatic participants who are genetically at risk for ALS. The participants will be followed for up to 36 months (3 years), and will include 4 in-person on-site visits once a year and 6 off-site(remote) visits once in 4 months. The study includes collection of medical history, clinical outcomes, and blood samples once in 4 months. Additionally, the participants will complete patient reported outcomes and speech recordings once in 4 months. Participants may also provide optional Cerebrospinal Fluid (CSF) samples.The participants may also opt into a sub-study if they are interested in genetic testing for ALS causative genes. The sub-study will involve a minimum of 3 visits over a course of 2-3 months. This will include a screening/pre-test genetic counseling visit, a return of genetic results and a post-test counseling visit.

Conditions: Amyotrophic Lateral Sclerosis

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

  • Age 18 years or older
  • Capable of providing informed consent
  • Willing to follow study procedures
  • First-degree relative of a known carrier of any ALS causative gene1 (regardless of whether ALS or FTD has actually been symptomatic in the family) OR First-degree relative of an individual with ALS and/or FTD in a family with a "compelling family history" of ALS/FTD, regardless of whether genetic testing has occurred in symptomatic family members. A "compelling family history" is defined as a pedigree with at least 2 close relatives who had ALS or FTD, with at least one of those family members having had ALS.
  • Access to a smartphone, computer, or tablet, and internet (need not be in the home - access to a public library or other available computer with internet connection is sufficient)

Exclusion Criteria

  • Evidence of neurological signs or symptoms concerning for ALS of FTD, at the discretion of the site investigator which will be communicated to the applicant along with referral for appropriate clinical follow-up.
  • Significant cognitive impairment, clinical dementia, or unstable psychiatric illness, including psychosis, active suicidal ideation, suicide attempt, or untreated major depression \<= 90 days (about 3 months) of screening, which in the opinion of the Investigator would interfere with the study procedures
  • Clinically significant, unstable medical condition (e.g., cardiovascular instability, systemic infection, untreated thyroid dysfunction, malignant and potentially progressive cancer) that would render the participant unlikely to be able to complete 12 months of follow-up, according to Investigator's judgment

Exclusion Criteria for Participants Undergoing Optional Lumbar Puncture

  • Medically unable to undergo lumbar puncture (LP) as determined by the site investigator (i.e., bleeding disorder, a skin infection at or near the LP site, known or suspected intracranial or intraspinal tumor or other cause of increased intracranial pressure).
  • Allergy to Lidocaine or other local anesthetic agents.
  • Use of anticoagulant medication or antiplatelet medications (aside from aspirin 81 mg) that cannot be safely withheld prior to lumbar puncture.
  • Blood dyscrasia, abnormal bleeding diathesis, or the use of dialysis for renal failure.
  • Current pregnancy based on participant self-report
  • Clinical judgement of the site investigator that the participant would be unable to undergo multiple lumbar punctures.

Inclusion Criteria for Genetic Testing Results Sub-study

  • Age 18 years of age or older
  • Capable of providing informed consent
  • Willing to follow study procedures
  • Currently enrolled in the PREVENT ALS Study

Recruiting US locations

  • University of Alabama Birmingham

    Birmingham, AL 35294

    Site contact: Melanie Benge · 205-975-0445 · melaniebenge@uabmc.edu

  • Barrow Neurological Institute

    Phoenix, AZ 85013

    Site contact: Christopher Shiver · 602-406-7773 · fulton.research@dignityhealth.org

  • University of California San Diego

    La Jolla, CA 92037

    Site contact: Gil Gutierrez · 858-246-2325 · grg005@health.ucsd.edu

  • University of California Irvine

    Orange, CA 92868

    Site contact: Rosa Gonzalez · 714-456-6191 · rosaig1@hs.uci.edu

  • University of California, San Francisco

    San Francisco, CA 94143

    Site contact: Hannah George · 415-353-2959 · hannah.george@ucsf.edu

  • University of Colorado Anschutz Medical Campus

    Aurora, CO 80045

    Site contact: Alexis Shepardson · 303-724-4644 · neuroresearch@cuanschutz.edu

  • Hospital for Special Care

    New Britain, CT 06053

    Site contact: Sabine Lebel-Hardenac · shardenack@hfsc.org

  • Georgetown University

    Washington D.C., DC 200007

    Site contact: Cassandra Holmes · 904-953-3730 · cassie.holmes@georgetown.edu

  • Mayo Clinic

    Jacksonville, FL 32224

    Site contact: Jeffery Gainer · (904) 953 3730 · gainer.jeffery@mayo.edu

  • Saint Alphonsus Regional Medical Center

    Boise, ID 83704

    Site contact: Helena Snider · 208-367-7397 · neuro.research@saintalphonsus.org

  • Northwestern University

    Chicago, IL 60611

    Site contact: Aeryn Hopwood · 312-503-5166 · aeryn.hopwood@northwestern.edu

  • Indiana University

    Indianapolis, IN 46202

    Site contact: Angela Micheels · 317-963-7385 · amicheel@iu.edu

  • John Hopkins University

    Baltimore, MD 21205

    Site contact: Colleen Kane · 410-502-6184 · Ckane13@jh.edu

  • Nih/Ninds

    Bethesda, MD 20892

    Site contact: Katelyn Porter · 301-451-1229 · katelyn.porter@nih.gov

  • Massachusetts General Brigham

    Boston, MA 02145

    Site contact: Anika Allen · (617) 724-9196 · mghpreventallals@mgb.org

  • University of Michigan

    Ann Arbor, MI 48109

    Site contact: Caroline Piecuch · 734-936-8781 · carolinp@med.umich.edu

  • Henry Ford Health

    Detroit, MI 48202

    Site contact: Maria Stotland · 313-916-3359 · mstotla1@hfhs.org

  • University of Minnesota

    Minneapolis, MN 55455

    Site contact: Claire Mavis · 612-624-2483 · mavis009@umn.edu

  • Washington University

    St Louis, MO 63110

    Site contact: Jesse Markway · 844-257-2273 · als@wustl.edu

  • University of Nebraska Medical Center

    Omaha, NE 68198

    Site contact: Veronica Alonso · 402-559-2012 · valonso@unmc.edu

  • Dartmouth Hitchcock Medical Center

    Lebanon, NH 03756

    Site contact: Kathleen Sullivan · 603-650-6496 · DHALLALS@Hitchcock.org

  • Columbia University

    New York, NY 10032

    Site contact: Ben Hoover · 646-574-7399 · bnh2119@cumc.columbia.edu

  • Duke University

    Durham, NC 27705

    Site contact: alsresearch@dm.duke.edu

  • Ohio State University

    Columbus, OH 43221

    Site contact: Alexander Michael · 614-685-4741 · alsresearch@osumc.edu

  • Providence ALS Center

    Portland, OR 97213

    Site contact: Kimberly Perry · (971) 231-8245 · kimberly.perry2@providence.org

  • Penn State Health

    Hershey, PA 17033

    Site contact: Michele Hare · 717-531-8257 · nervemuscle@pennstatehealth.psu.edu

  • Temple University

    Philadelphia, PA 19140

    Site contact: John Furey · 267-694-0573 · tuf40109@temple.edu

  • Texas Neurology

    Dallas, TX 75206

    Site contact: Reham Azab · 214-827-3610 · razab@texasneurology.com

  • University of Utah

    Salt Lake City, UT 84132

    Site contact: Scott Redlin · 801-581-7437 · scott.redlin@utah.edu

  • Virginia Commonwealth University

    Richmond, VA 23298

    Site contact: Demetrius Carter · 804-655-0691 · demetrius.r.carter@vcuhealth.org

  • University of Washington

    Seattle, WA 98195

    Site contact: Lila Brisk · 206-543-0454 · lbrisk@uw.edu

Study contacts (from the official record)

  • ALL ALS Patient Navigator · 602-845-0248 · info@all-als.org
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PREVENT ALL ALS Study (NCT06581861) | Bored Studies