ALS/MND Natural History Study Data Repository

Summary

This is a data repository for multi-site multi-protocol clinic-based Natural History Study of ALS and Other Motor Neuron Disorders (MND).

All people living with ALS or other MNDs who attend clinics at the Study hospitals (sites) are offered to participate in the Study.

The Sites collect so-called Baseline information including demographics, disease history and diagnosis, family history, etc. At each visit, the Sites also collect multiple disease-specific outcome measures and events. The information is captured in NeuroBANK, a patient-centric clinical research platform.

The Sites have an option to choose to collect data into 20+ additional forms capturing biomarkers and outcome measures. Captured data after its curation are anonymized (all personal identifiers and dates are being removed), and the anonymized dataset is shared with medical researchers via a non-exclusive revocable license.

Funding Source - Biogen, Inc.; Mitsubishi Tanabe Pharma America; FDA OOPD.

Conditions

• ALS
• PLS
• MND (Motor Neurone DIsease)
• Kennedy Disease
• PMA - Progressive Muscular Atrophy
• PBP - Progressive Bulbar Palsy

Sponsors & Collaborators

• Henry Ford Health System

  collaborator OTHER

• Northwestern University

  collaborator OTHER

• Temple University

  collaborator OTHER

• St. Louis University

  collaborator OTHER

• University of Florida

  collaborator OTHER

• University of Minnesota

  collaborator OTHER

• Virginia Commonwealth University

  collaborator OTHER

• Fondazione Serena Onlus - Centro Clinico NeMO Milano

  collaborator OTHER

• Providence Health & Services

  collaborator OTHER

• University of Pittsburgh

  collaborator OTHER

• Istituti Clinici Scientifici Maugeri SpA

  collaborator OTHER

• Lahey Clinic

  collaborator OTHER

• Hadassah Medical Organization

  collaborator OTHER

• Tel Aviv Medical Center

  collaborator OTHER

• Kaiser Permanente

  collaborator OTHER

• Trinity Health Michigan

  collaborator OTHER

• Thomas Jefferson University

  collaborator OTHER

• Massachusetts General Hospital

  lead OTHER

Principal Investigators

• Alexander Sherman · Massachusetts General Hospital

Eligibility

Min Age

18 Years

Max Age

90 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2015-04-01

Primary Completion

2030-12-31

Completion

2030-12-31

Countries

• United States
• Israel
• Italy

Study Locations