ALS/MND Natural History Study Data Repository

Part of paid clinical trials in Loma Linda, California.

Sponsor
Massachusetts General Hospital
Study ID
NCT05966038
Status
Recruiting
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Conditions

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

Eligibility Criteria

Sex
ALL
Age
18 Years - 90 Years
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Apr 1, 2015
Status verified
May 2026
Primary completion
Dec 31, 2030
Completion
Dec 31, 2030

Study Design

Enrollment
5,000 participants (estimated)

Primary Outcome Measure

ALS Functional Rating Scale-Revised (ALSFRS-R) [ Time Frame: Every 3-4 months up to 5 years ]

Central Contacts

Locations (14)

FacilityCityStateZIPSite coordinators
Loma Linda University HealthLoma LindaCalifornia92354
Jeffrey Rosenfeld, MD (PRINCIPAL_INVESTIGATOR)
Kaiser PermanenteLos AngelesCalifornia90027
Chris Greer
[email protected]
323-783-9284
Abel Wu, MD (PRINCIPAL_INVESTIGATOR)
University of FloridaGainesvilleFlorida32610
Jennifer Steshyn
[email protected]
James Wymer (PRINCIPAL_INVESTIGATOR)
Northwestern UniversityChicagoIllinois60611
Emma Schmidt
[email protected]
312-503-4362
Senda Ajroud-Driss (PRINCIPAL_INVESTIGATOR)
Lahey ClinicBurlingtonMassachusetts01805
Sorieba Fofanah
[email protected]
781-744-2958
Melo Catia
[email protected]
Medhi Ghasemi, MD (PRINCIPAL_INVESTIGATOR)
Henry Ford Health SystemDetroitMichigan48202
Anne Vallis
[email protected]
313-916-1364
Ximena Arcila Londono (PRINCIPAL_INVESTIGATOR)
Trinity Health MichiganGrand RapidsMichigan49503
Nicolina Evola
[email protected]
616-685-6195
Katherine Schwass
[email protected]
616-685-5437
Melanie G Taylor, MD (PRINCIPAL_INVESTIGATOR)
University of MinnesotaMinneapolisMinnesota55455
Valerie Ferment
[email protected]
612-301-1535
David Walk (PRINCIPAL_INVESTIGATOR)
Saint Louis UniversitySt LouisMissouri63104
Katie Forsman
[email protected]
Ghazala Hayat (PRINCIPAL_INVESTIGATOR)
Providence ALS ClinicPortlandOregon97213
Tyler Regan
[email protected]
503-215-2333
Nicholas Olney (PRINCIPAL_INVESTIGATOR)
Temple University Lewis Katz School of MedicinePhiladelphiaPennsylvania19140
John Furey
[email protected]
267-694-0573
Terry Heiman-Patterson (PRINCIPAL_INVESTIGATOR)
Thomas Jefferson UniversityPhiladelphiaPennsylvania19107
Gemma Krautzel
[email protected]
267-582-6061
Hristelina Ilieva, MD (PRINCIPAL_INVESTIGATOR)
University of PittsburghPittsburghPennsylvania15360
Helen Ismail
[email protected]
412-864-2873
Tawfiq Al-lahham, MD (PRINCIPAL_INVESTIGATOR)
Virginia Commonwealth UniversityRichmondVirginia22908
Demetrius Carter
[email protected]
Kelly Gwathmey (PRINCIPAL_INVESTIGATOR)

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