Massive data bank launched to unlock secrets of ALS and motor neuron diseases

NCT ID NCT05966038

Recruiting now Knowledge-focused Sponsor: Massachusetts General Hospital Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is building a large database of health information from 5,000 people with ALS and other motor neuron diseases. Participants share details like symptoms, test results, and disease progression during regular clinic visits. The de-identified data is then shared with researchers worldwide to help them better understand these conditions and develop new treatments.

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis bulbospinal muscular atrophy Kennedy disease lateral sclerosis motor neuron disorder Papillon-Lefevre disease progressive bulbar palsy progressive muscular atrophy spinal muscular atrophy

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ALS KENNEDY DISEASE MND (MOTOR NEURONE DISEASE) PBP - PROGRESSIVE BULBAR PALSY PLS PMA - PROGRESSIVE MUSCULAR ATROPHY

Contacts and locations

Locations

Centro Clinico NEMO Milano
RECRUITING

Milan, 20162, Italy
Hadassah Medical Organization
RECRUITING

Jerusalem, 9112001, Israel
Henry Ford Health System
RECRUITING

Detroit, Michigan, 48202, United States
Istituti Clinici Scientifici Maugeri SpA
RECRUITING

Milan, 20138, Italy
Kaiser Permanente
RECRUITING

Los Angeles, California, 90027, United States
Lahey Clinic
RECRUITING

Burlington, Massachusetts, 01805, United States
Loma Linda University Health
RECRUITING

Loma Linda, California, 92354, United States
Northwestern University
RECRUITING

Chicago, Illinois, 60611, United States
Providence ALS Clinic
RECRUITING

Portland, Oregon, 97213, United States
Saint Louis University
RECRUITING

St Louis, Missouri, 63104, United States
Tel Aviv Medical Center
RECRUITING

Tel Aviv, 64239, Israel
Temple University Lewis Katz School of Medicine
RECRUITING

Philadelphia, Pennsylvania, 19140, United States
Thomas Jefferson University
RECRUITING

Philadelphia, Pennsylvania, 19107, United States
Trinity Health Michigan
RECRUITING

Grand Rapids, Michigan, 49503, United States
University of Florida
RECRUITING

Gainesville, Florida, 32610, United States
University of Minnesota
RECRUITING

Minneapolis, Minnesota, 55455, United States
University of Pittsburgh
RECRUITING

Pittsburgh, Pennsylvania, 15360, United States
Virginia Commonwealth University
RECRUITING

Richmond, Virginia, 22908, United States

More trials for these conditions

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