ASSESS ALL ALS Study

NCT ID: NCT06578195

Last Updated: 2026-01-12

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

2000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-07-25

Study Completion Date

2029-07-25

Brief Summary

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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.

Detailed Description

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Conditions

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Amyotrophic Lateral Sclerosis

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Symptomatic ALS on-site participants

Symptomatic ALS Participants who are completing on-site visits at one of the 35 participating ALL ALS sites.

No interventions assigned to this group

Symptomatic ALS off-site (remote) participants

Symptomatic ALS Participants who are completing visits study visits remotely through video-conferencing. Home Phlebotomy is being used to collect blood from these participants.

No interventions assigned to this group

Control participants

Control participants who do not have a diagnosis of ALS , Progressive Muscular Atrophy (PMA) or Primary Lateral Sclerosis (PLS). These participants complete on-site visits.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

1. Age 18 years or older
2. Capable of providing informed consent
3. Willing to follow study procedures
4. Diagnosis of ALS by a physician
5. 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)


1. Age 18 years or older
2. Capable of providing informed consent
3. Willing to follow study procedures
4. No diagnosis of ALS , Progressive Muscular Atrophy (PMA) or Primary Lateral Sclerosis (PLS)
5. 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.
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)

Exclusion Criteria

1. 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.
2. 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.


1. 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).
2. Allergy to Lidocaine or other local anesthetic agents.
3. Use of anticoagulant medication or antiplatelet medications (aside from aspirin 81 mg) that cannot be safely withheld prior to lumbar puncture.
4. Blood dyscrasia, abnormal bleeding diathesis, or the use of dialysis for renal failure.
5. Current pregnancy based on participant self-report
6. Clinical judgement of the site investigator that the participant would be unable to undergo multiple lumbar punctures.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Massachusetts General Hospital

OTHER

Sponsor Role collaborator

National Institute of Neurological Disorders and Stroke (NINDS)

NIH

Sponsor Role collaborator

Foundation for the National Institutes of Health

OTHER

Sponsor Role collaborator

St. Joseph's Hospital and Medical Center, Phoenix

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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University of Alabama Birmingham

Birmingham, Alabama, United States

Site Status RECRUITING

Barrow Neurological Institute

Phoenix, Arizona, United States

Site Status RECRUITING

University of California, Irvine

Irvine, California, United States

Site Status RECRUITING

University of California San Diego

La Jolla, California, United States

Site Status RECRUITING

University of California, San Francisco

San Francisco, California, United States

Site Status RECRUITING

University of Colorado Anschutz Medical Campus

Aurora, Colorado, United States

Site Status RECRUITING

Hospital For Special Care

New Britain, Connecticut, United States

Site Status RECRUITING

Georgetown University

Washington D.C., District of Columbia, United States

Site Status RECRUITING

Mayo Clinic

Jacksonville, Florida, United States

Site Status RECRUITING

Saint Alphonsus Regional Medical Center

Boise, Idaho, United States

Site Status RECRUITING

Northwestern University

Chicago, Illinois, United States

Site Status RECRUITING

Indiana University

Indianapolis, Indiana, United States

Site Status RECRUITING

John Hopkins University

Baltimore, Maryland, United States

Site Status RECRUITING

Nih/Ninds

Bethseda, Maryland, United States

Site Status RECRUITING

Massachusetts General Brigham

Boston, Massachusetts, United States

Site Status RECRUITING

University of Michigan

Ann Arbor, Michigan, United States

Site Status RECRUITING

Henry Ford Health

Detroit, Michigan, United States

Site Status RECRUITING

University of Minnesota

Minneapolis, Minnesota, United States

Site Status RECRUITING

Washington University

St Louis, Missouri, United States

Site Status RECRUITING

University of Nebraska Medical Center

Omaha, Nebraska, United States

Site Status RECRUITING

Dartmouth Hitchcock Medical Center

Lebanon, New Hampshire, United States

Site Status RECRUITING

Columbia University

New York, New York, United States

Site Status RECRUITING

Duke University

Durham, North Carolina, United States

Site Status RECRUITING

Ohio State University

Colombus, Ohio, United States

Site Status RECRUITING

Providence ALS Center

Portland, Oregon, United States

Site Status RECRUITING

Penn State Health

Hershey, Pennsylvania, United States

Site Status RECRUITING

Temple University

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Texas Neurology

Dallas, Texas, United States

Site Status RECRUITING

University of Utah

Salt Lake City, Utah, United States

Site Status RECRUITING

Virginia Commonwealth University

Richmond, Virginia, United States

Site Status RECRUITING

University of Washington

Seattle, Washington, United States

Site Status RECRUITING

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

San Juan, Puerto Rico, Puerto Rico

Site Status RECRUITING

Countries

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United States Puerto Rico

Central Contacts

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ALL ALS Patient Navigator

Role: CONTACT

602-845-0248

Facility Contacts

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Melanie Benge

Role: primary

205-975-0445

Christopher Shiver

Role: primary

6024067773

Rosa Gonzalez

Role: primary

714-456-6191

Gil Gutierrez

Role: primary

858-246-2325

Hannah George

Role: primary

415-353-2959

Alexis Shepardson

Role: primary

303-724-4644

Sabine Lebel-Hardenac

Role: primary

Cassandra Holmes

Role: primary

904-953-3730

Jany Dagher

Role: primary

904-953-3730

Jeffery Gainer

Role: backup

Helena Snider

Role: primary

208-367-7397

Aeryn Hopwood

Role: primary

(312) 503-5166

Lisa Grinstead

Role: primary

317-963-7382

Patti Hogan

Role: backup

617-724-9196

Delayne Willie

Role: primary

(410)502-6597

Katelyn Porter

Role: primary

301-451-1229

Miranda Duncan

Role: primary

(617) 643-9550

Caroline Piecuch

Role: primary

734-936-8781

Maria Stotland

Role: primary

313-916-3359

Julia Munoz

Role: primary

612-624-9989

Jesse Markway

Role: primary

1-844-257-2273

Nathan McKain

Role: primary

(402) 552-6241

Gina Kersey

Role: primary

603-650-6496

Ben Hoover

Role: primary

212-305-6788

Duke Research Team

Role: primary

Alexander Michael

Role: primary

614-685-4741

Kimberly Perry

Role: primary

(971) 231-8245

Michele Hare

Role: primary

717-531-8257

John Furey

Role: primary

267-694-0573

Haley Rucker

Role: primary

214-827-3610

Reham Azab

Role: backup

Scott Redlin

Role: primary

801-581-7437

Demetrius Carter

Role: primary

804-655-0691

Lila Brisk

Role: primary

(206) 543-0454

Frances M Aponte

Role: primary

734-936-8781

Other Identifiers

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1OT2NS136938

Identifier Type: NIH

Identifier Source: secondary_id

View Link

1OT2NS136939

Identifier Type: NIH

Identifier Source: secondary_id

View Link

2024P001132

Identifier Type: -

Identifier Source: org_study_id

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