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)
The 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.
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:
- Individuals with a clinical diagnosis of ALS or a related disorder, including FTD, HSP, PLS, PMA and MSP (sporadic or familial).
- 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.
National Institutes of Health (NINDS and NCATS)
CReATe Therapies for ALS & Related Disorders
- 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)
Research coordination
- Sumaira Hussain, B.S. (CReATe Project Manager, University of Miami)
- Jessica Medina, B.S. (Site Coordinator, University of Miami)
- Jessica Hernandez, RMA (Site Coordinator, University of Miami)
Contact information
- Email: projectcreate@miami.edu
- Phone number: 1-844-837-1031
- 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 ]
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