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CReATe PGB: Phenotype, Genotype, and Biomarkers

About the Study

Principal Investigator: Michael Benatar, MD, PhD

Site-PIs:

  • Michael Benatar, MD, PhD (University of Miami)
  • Richard Barohn, MD (Kansas University Medical Center)
  • John Ravits, MD (University of California San Diego)
  • Carlayne Jackson, MD (University of Texas Health Science Center San Antonio)
  • Jonathan Katz, MD (California Pacific Medical Center)
  • Andrea Swenson, MD (University of Iowa)
  • Ted Burns, MD (University of Virginia Health System)
  • Jaya Trivedi, MD (University of Texas Southwestern)
  • James Caress, MD (Wake Forrest University)
  • Eric Pioro, MD (Cleveland Clinic Ohio)
  • Rebecca Schule, MD (University of Tuebingen)

RDCRN logoThe CReATe Consortium, initiated and led by Dr. Michael Benatar, is a new member of the NIH’s Rare Disease Clinical Research Network (RDCRN). The scientific goals of CReATe PGB, the first study undertaken by the CReATe Consortium, are to better understand the relationship between phenotype and genotype in ALS and related disorders (including PLS, HSP, PMA, FTD and MSP); and to develop biomarkers that might be useful in aiding therapy development for this group of disorders. Each year CReATe will also fund 1-2 pilot biomarker discovery project(s) that will utilize biological samples collected from patients who are enrolled in PBG (or other research studies) through the CReATe consortium.

Eligibility Criteria

Patients with ALS or a related neurodegenerative disorder, including FTD, HSP, PLS, PMA, and MSP. Select family members of affected participants.

Inclusion Criteria:

  • Member of at least one of the following categories:
    1. Individuals with a clinical diagnosis of ALS or a related disorder, including FTD, HSP, PLS, PMA and MSP (sporadic or familial).
    2. Family members of an enrolled affected individual.
  • Able and willing to comply with relevant procedures.

Exclusion Criteria:

  • Affected with end or late stage disease.
  • A condition or situation which, in the PI’s opinion, could confound the study finding or may interfere significantly with the individual’s participation and compliance with the study protocol. This includes (but is not limited to) neurological, psychological, and/or medical conditions.
Funding Agencies

NIH_Master_Logo
National Institutes of Health (NINDS and NCATS)

CREATE-Logo-Color-Transparent
CReATe Therapies for ALS & Related Disorders

Collaborators
  • Stephan Zuchner, MD, PhD (University of Miami)
  • Jacob McCauley, PhD (University of Miami)
  • Joanne Wuu, ScM (University of Miami)
  • Evadnie Ramersaud, PhD (St. Jude’s Children’s Hospital)
  • Claes Wahlestedt, MD, PhD (University of Miami)
  • Zane Zeier, PhD (University of Miami)
  • Rebecca Schule, MD (University of Tuebingen, Germany)
  • J Paul Taylor, MD, PhD (St. Jude’s Children’s Hospital)
  • Rosa Rademakers, PhD (Mayo Clinic Jacksonville)
  • Richard Bedlack, MD, PhD (Duke University)
  • Richard Barohn, MD (University of Kansas Medical Center)
  • Jeffrey Burns, MD, PhD (University of Kansas Medical Center)
  • Viswanathan Ramakrishnan, PhD (Medical University of South Carolina)
Contact

Research coordination

  • Jessica Hernandez
  • Kristina Reyes
  • Maria Elena Paredes

Contact information

  • Email: projectcreate@miami.edu
  • Phone number: 1-844-837-1031
Links
  • CReATe Consortium
  • University of Miami Press Release
  • NIH Press Release
Publications
  • Shepheard SR, Wuu J, Wiklendt L, Dinning PG, Andersen PM, Chataway T, Schultz D, Benatar M, Rogers ML. Urinary neurotrophin receptor p75 extracellular domain: a longitudinal biomarker for ALS progression. Neurology. 2017 Feb 22. [Epub ahead of print]
  • Turner MR, Benatar M. Ensuring continued progress in biomarkers for amyotrophic lateral sclerosis. Muscle Nerve. 2015 Jan;51(1):14-8. Epub 2014 Nov 24. [ Pubmed Link ]

Back to Research Studies

Active Research Studies

  • Research Studies (All)
  • Pre-fALS
  • CReATe PGB
  • PRESS-ALS
  • CRiALS Biomarker
  • CRiALS Genetics
  • Neuraltus NP001

Contact Us

By phone:
For familial ALS and general inquiries:
1-888-413-9315
For the CReATe Consortium and related studies:
1-844-837-1031

By email:
fals@miami.edu (For familial ALS inquiries)
projectcreate@miami.edu (For CReATe inquiries)
alsresearch@miami.edu (General inquiries)

Support Our Research

Affiliates

  • CReATe Consortium
  • CReATe Connect
  • The Kessenich Family ALS Center at UM
  • ALS Recovery Fund
  • ALS Association
  • Muscular Dystrophy Association
  • CDC National ALS Registry
  • The Northeastern ALS Consortium
  • Myasthenia Gravis Research Group
Read Our Newsletter

News

  • Biomarker for ALS Disease Progression Identified by the Teams at University of Miami and Flinders University!03/07/2017 - 5:48 pm
  • Brain MedicineDr. Benatar presents promising phase II trial results of Arimoclomol in SOD1 ALS12/09/2016 - 5:02 pm
  • CReATe Consortium Virtual Journal Club12/08/2016 - 3:18 pm
More News
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