ALS/MND Natural History Study Data Repository

Status: Recruiting
Location: See all (14) locations...
Study Type: Observational
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.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Maximum Age: 90
Healthy Volunteers: f
View:

• 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)

Locations
United States
Florida
University of Florida
RECRUITING
Gainesville
Illinois
Northwestern University
RECRUITING
Chicago
Massachusetts
Lahey Clinic
RECRUITING
Burlington
Michigan
Henry Ford Health System
RECRUITING
Detroit
Minnesota
University of Minnesota
RECRUITING
Minneapolis
Missouri
Saint Louis University
RECRUITING
St Louis
Oregon
Providence ALS Clinic
RECRUITING
Portland
Pennsylvania
Temple University Lewis Katz School of Medicine
RECRUITING
Philadelphia
University of Pittsburgh
RECRUITING
Pittsburgh
Virginia
Virginia Commonwealth University
RECRUITING
Richmond
Other Locations
Israel
Hadassah Medical Organization
RECRUITING
Jerusalem
Tel Aviv Medical Center
RECRUITING
Tel Aviv
Italy
Centro Clinico NEMO Milano
RECRUITING
Milan
Istituti Clinici Scientifici Maugeri SpA
RECRUITING
Milan
Contact Information
Primary
Natalia Tarasenko
ntarasenko@mgh.harvard.edu
1617240346
Time Frame
Start Date: 2015-04-01
Estimated Completion Date: 2030-12-31
Participants
Target number of participants: 5000
Sponsors
Collaborators: University of Florida, Fondazione Serena Onlus - Centro Clinico NeMO Milano, Providence Health & Services, University of Pittsburgh, St. Louis University, University of Minnesota, Temple University, Northwestern University, Virginia Commonwealth University, Hadassah Medical Organization, Tel Aviv Medical Center, Henry Ford Health System, Lahey Clinic, Istituti Clinici Scientifici Maugeri SpA
Leads: Massachusetts General Hospital

This content was sourced from clinicaltrials.gov