RECRUITING

ALS/MND Natural History Study Data Repository

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

ALS/MND Natural History Study Data Repository

Quick Facts

Study Start:2015-04-01
Study Completion:2030-12-31
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05966038

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years to 90 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * A clinical diagnosis of El Escorial of suspected, possible, probable, or definite ALS or
  2. * 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)
  1. * Disease does not meet criteria for any motor neuron disorder

Contacts and Locations

Study Contact

Natalia Tarasenko
CONTACT
1617240346
ntarasenko@mgh.harvard.edu

Principal Investigator

Alexander Sherman
PRINCIPAL_INVESTIGATOR
Massachusetts General Hospital

Study Locations (Sites)

University of Florida
Gainesville, Florida, 32610
United States
Northwestern University
Chicago, Illinois, 60611
United States
Lahey Clinic
Burlington, Massachusetts, 01805
United States
Henry Ford Health System
Detroit, Michigan, 48202
United States
University of Minnesota
Minneapolis, Minnesota, 55455
United States
Saint Louis University
Saint Louis, Missouri, 63104
United States
Providence ALS Clinic
Portland, Oregon, 97213
United States
Temple University Lewis Katz School of Medicine
Philadelphia, Pennsylvania, 19140
United States
University of Pittsburgh
Pittsburgh, Pennsylvania, 15360
United States
Virginia Commonwealth University
Richmond, Virginia, 22908
United States

Collaborators and Investigators

Sponsor: Massachusetts General Hospital

  • Alexander Sherman, PRINCIPAL_INVESTIGATOR, Massachusetts General Hospital

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2015-04-01
Study Completion Date2030-12-31

Study Record Updates

Study Start Date2015-04-01
Study Completion Date2030-12-31

Terms related to this study

Additional Relevant MeSH Terms

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