ASSESS ALL ALS Study

This is an observational study called the ASSESS ALL ALS Study, which means researchers will collect information and samples from people with Amyotrophic Lateral Sclerosis (ALS), ALS gene carriers, and healthy volunteers. The goal is to gather a wide range of data to help future research into ALS. There are no specific interventions or treatments being tested in this study. To participate, you must be 18 or older, have a physician's diagnosis of ALS, and have access to a smartphone, computer, or tablet with internet. The study aims to enroll 2000 participants. Researchers will track your ALS symptoms using the ALS Functional Rating Scale-Revised (ALSFRS-R) over 24 months.

Study design
This is an observational study with a planned enrollment of 2000 participants. It is not specified if it is randomized or blinded.
What's involved
For ALS participants, your ALS symptoms will be measured using the ALSFRS-R at various time points over 24 months. You will need to provide informed consent and follow study procedures.
Compensation
Not stated in the trial record.
Follow-up
ALS participants will have their symptoms measured for up to 24 months.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06578195

ASSESS ALL ALS Study

Recruiting
Not specifiedAges 18+Observational
St. Joseph's Hospital and Medical Center, Phoenix
~2,000 participants
Updated 2026-08-24 on ClinicalTrials.gov

At a glance

Recruiting sites
37 of 37 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
ALS Functional Rating Scale-Revised (ALSFRS-R)
Measured over Baseline, 4, 8, 12, 16, 20 and 24 months for ALS participants only.
+1 more outcome measured
Amyotrophic Lateral Sclerosis

NCT06578195

Where you'd take part

This study runs at 37 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Barrow Neurological Institute

    Phoenix, Arizonastudy coordinator listed

    Recruiting

  • CHALS-CCT, University of Puerto Rico, Medical Sciences Campus

    San Juan, Puerto Rico, Puerto Ricostudy coordinator listed

    Recruiting

  • Columbia University

    New York, New Yorkstudy coordinator listed

    Recruiting

  • Dartmouth Hitchcock Medical Center

    Lebanon, New Hampshirestudy coordinator listed

    Recruiting

  • Duke University

    Durham, North Carolinastudy coordinator listed

    Recruiting

  • Georgetown University

    Washington D.C., District of Columbiastudy coordinator listed

    Recruiting

  • Henry Ford Health

    Detroit, Michiganstudy coordinator listed

    Recruiting

  • Hospital For Special Care

    New Britain, Connecticutstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

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Eligibility criteria

Inclusion

\*\* 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. 6. 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)
  • ALS Functional Rating Scale-Revised (ALSFRS-R)Baseline, 4, 8, 12, 16, 20 and 24 months for ALS participants only.

    Questionnaire administered by a clinician that includes a series of questions about participants' ability to function in certain daily activities. Each type of function is scored from 4 (normal) to 0 (no ability), with a maximum total score of 48 and a minimum total score of 0. Patients with higher scores have more physical function.

  • ALS Functional Rating Scale-Revised Self entry (ALSFRS-RSE)Baseline, 2, 4 ,6, 8, 10, 12, 14,16, 18,20, 22 and 24 months for ALS participants only

    Questionnaires completed by participants that includes questions about participants ability to function in certain daily activities. Each type of function is scored from 4 (normal) to 0 (no ability), with a maximum total score of 48 and a minimum total score of 0. Patients with higher scores have more physical function.