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ASSESS ALL ALS Study

St. Joseph's Hospital and Medical Center, Phoenix · with Massachusetts General Hospital, National Institute of Neurological Disorders and Stroke (NINDS) · NCT06578195

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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
2000
US sites recruiting
36
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 being 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.

ASSESS protocol is specific for symptomatic ALS and control participants. This protocol includes both on-site and off-site(remote) participants. The participants will be followed for 24 months (2 years), and will include 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 a month. Participants who are coming into clinic may also provide optional Cerebrospinal Fluid (CSF) samples.

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 for ALS participants

  • Age 18 years or older
  • Capable of providing informed consent
  • Willing to follow study procedures
  • Diagnosis of ALS by a physician
  • 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)

Inclusion Criteria for control participants:

  • Age 18 years or older
  • Capable of providing informed consent
  • Willing to follow study procedures
  • No diagnosis of ALS , Progressive Muscular Atrophy (PMA) or Primary Lateral Sclerosis (PLS)
  • No history of familial ALS/Frontotemporal Dementia (FTD) in a close family member** unless the participant has previously tested negative for the known causative ALS genes. Participants with a family history of singleton ALS are permitted to enroll.
  • ** Defined by the presence of a known ALS causative gene such as C9orf72 in a family member or a family history suggestive of an inherited ALS/FTD syndrome defined by two family members with a history of ALS and/or FTD.
  • 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 for all participants

  • Significant cognitive impairment, clinical dementia, or unstable psychiatric illness, including psychosis, active suicidal ideation, suicide attempt, or untreated major depression \<= 90 days of screening, that would interfere with the study procedure, according to Investigator's judgement.
  • Clinically significant unstable medical condition (other than ALS) (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.

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 · 6024067773 · fulton.research@dignityhealth.org

  • University of California, Irvine

    Irvine, CA 92868

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

  • University of California San Diego

    La Jolla, CA 98037

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

  • University of California, Los Angeles

    Los Angeles, CA 90095

    Site contact: Elizabeth Cruz · 310-825-6930 · elizabethcruz@mednet.ucla.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 20007

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

  • Nova Southeastern University

    Davie, FL 33314

    Site contact: Donovan Mott · 954-262-6387 · donovan.mott@nova.edu

  • Mayo Clinic

    Jacksonville, FL 32224

    Site contact: Jany Dagher · 904-953-3730 · dagher.jany@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

  • Synapticure (Remote Participation Only)

    Chicago, IL 60612

    Site contact: Lindsey Haddock · (708) 507-9691 · lindsey@synapticure.com

  • Indiana University

    Indianapolis, IN 46202

    Site contact: Lisa Grinstead · 317-963-7382 · lgrinste@iu.edu

  • John Hopkins University

    Baltimore, MD 21205

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

  • Nih/Ninds

    Bethseda, MD 20892

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

  • Massachusetts General Brigham

    Boston, MA 02145

    Site contact: Miranda Duncan · (617) 643-9550 · mghassessallals@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: Julia Munoz · 612-624-9989 · munoz156@umn.edu

  • Washington University

    St Louis, MO 63110

    Site contact: Jesse Markway · 1-844-257-2273 · 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: Gina Kersey · 603-650-6496 · DHALLALS@Hitchcock.org

  • Columbia University

    New York, NY 10032

    Site contact: Ben Hoover · 212-305-6788 · alsresearch@cumc.columbia.edu

  • Duke University

    Durham, NC 27705

    Site contact: Duke Research Team · alsresearch@dm.duke.edu

  • Ohio State University

    Colombus, 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

  • University of Pennsylvania

    Philadelphia, PA 19104

    Site contact: Matthew Burst · 215-615-0550 · matthew.burst@pennmedicine.upenn.edu

  • Temple University

    Philadelphia, PA 19140

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

  • Vanderbilt University Medical Center

    Nashville, TN 37232

    Site contact: Nicola Rutherford · 615-875-9137 · nicola.j.rutherford.1@vumc.org

  • Texas Neurology

    Dallas, TX 75206

    Site contact: Haley Rucker · 214-827-3610 · hrucker@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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ASSESS ALL ALS Study (NCT06578195) | Bored Studies