Data repository for ALS and other motor neuron disorders

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study collects and curates data from individuals diagnosed with ALS and other motor neuron disorders at multiple clinical sites. Participants provide baseline information, including demographics and disease history, and undergo regular clinical assessments to gather longitudinal data. The data is captured in the NeuroBANK platform, which allows for the linking of clinical data with biological samples and other studies. Anonymized datasets are then shared with researchers to advance understanding of these conditions.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* A clinical diagnosis of El Escorial of suspected, possible, probable, or definite ALS or
* Other motor neuron disorders, including but not limited to Spinal-Bulbar Muscular Atrophy (SBMA, Kennedy's disease), Spinal Muscular Atrophy (SMA), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA), and Progressive Bulbar Palsy (PBP)

Exclusion Criteria:

* Disease does not meet criteria for any motor neuron disorder

Where it's running

• Loma Linda University Health
  Loma Linda, California, United States Recruiting
• Kaiser Permanente
  Los Angeles, California, United States Recruiting
• University of Florida
  Gainesville, Florida, United States Recruiting
• Northwestern University
  Chicago, Illinois, United States Recruiting
• Lahey Clinic
  Burlington, Massachusetts, United States Recruiting
• Henry Ford Health System
  Detroit, Michigan, United States Recruiting

Study contacts

• Principal investigator: Alexander Sherman — Massachusetts General Hospital
• Study coordinator: Natalia Tarasenko
• Email: ntarasenko@mgh.harvard.edu
• Phone: 1617240346

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.