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.
ALS, PLS, MND (Motor Neurone DIsease), Kennedy Disease, PMA - Progressive Muscular Atrophy, PBP - Progressive Bulbar Palsy
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.
ALS/MND Natural History Study Data Repository
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University of Florida, Gainesville, Florida, United States, 32610
Northwestern University, Chicago, Illinois, United States, 60611
Lahey Clinic, Burlington, Massachusetts, United States, 01805
Henry Ford Health System, Detroit, Michigan, United States, 48202
University of Minnesota, Minneapolis, Minnesota, United States, 55455
Saint Louis University, Saint Louis, Missouri, United States, 63104
Providence ALS Clinic, Portland, Oregon, United States, 97213
Temple University Lewis Katz School of Medicine, Philadelphia, Pennsylvania, United States, 19140
University of Pittsburgh, Pittsburgh, Pennsylvania, United States, 15360
Virginia Commonwealth University, Richmond, Virginia, United States, 22908
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.
For general information about clinical research, read Learn About Studies.
18 Years to 90 Years
ALL
No
Massachusetts General Hospital,
Alexander Sherman, PRINCIPAL_INVESTIGATOR, Massachusetts General Hospital
2030-12-31