Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium (CReATe)

At a Glance
  • Status: Active Consortium
  • Year Launched: 2014
  • Initiating Organization: NIH Rare Disease Clinical Research Network
  • Initiator Type: Government
  • Rare disease
  • Disease focus:
    Frontotemporal Dementia, Hereditary Spastic Paraplegia, Primary Lateral Sclerosis, Progressive Muscular Atrophy, Amyotrophic Lateral Sclerosis
  • Location: International



The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium will enroll patients with sporadic and familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). Its goals are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, as well as through the discovery and development of biomarkers.

Structure & Governance

This consortium is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS). The RDCRN is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation.

Funding and scientific oversight for the RDCRN are provided by NCATS and 10 National Institutes of Health components: Eunice Kennedy Shriver National Institute of Child Health and Human Development; the National Cancer Institute; National Heart, Lung and Blood Institute; National Institute of Allergy and Infectious Diseases; National Institute of Arthritis and Musculoskeletal and Skin Diseases; National Institute of Dental and Craniofacial Research; National Institute of Diabetes and Digestive and Kidney Diseases; National Institute of Mental Health; National Institute of Neurological Disorders and Stroke; and Office of the Director. In addition, patient advocacy groups provide funds for many of the projects.

Patient Engagement

The RDCRN CReATe Contact Registry is a way for patients with amyotrophic lateral sclerosis, related disorders, and their family members to learn about CReATe research studies they may be able to join. Participation is completely voluntary, and participants can withdraw at any time. There is no cost to join the Contact Registry.

Points of Contact

Sumaira Hussain
1120 NW 14th Street
CRB 1312
Miami, FL 33136
Richard S. Bedlack, M.D., Ph.D.
Outreach and Advocacy Director
Duke University ALS Clinic
Box 3333
Durham, NC 27705
phone : 919-668-2839

Sponsors & Partners

Mayo Clinic Jacksonville

University of California San Diego

University of Kansas Medical Center

University of Miami

University of Tubingen, Germany

Last Updated: 04/14/2016

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