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Dr. Michael Benatar's CReATe Study on HSP, PLS, ALS, FTD, PMA & ASP

Affected with any of the diseases that are the focus of study by the CReATe Consortium, including ALS, ALS-FTD, HSP, PLS, PMA and MSP.
Unaffected family members of enrolled affected individuals.

Detailed Description:
This study will recruit patients with ALS, ALS-FTD, PLS, HSP, and PMA, with a focus on incident cases. Patients with both familial and sporadic forms of these diseases will be enrolled and followed longitudinally using a standardized set of evaluations. Biological samples (blood, urine, CSF) will be collected from all study participants, and will be used for biomarker discovery and validation. Family members of affected individuals may also be enrolled and asked to contribute DNA and biological samples to aid genetic and biomarker discovery.


Ages Eligible for Study: Child, Adult, Senior
Genders Eligible for Study: Both
Accepts Healthy Volunteers: Yes
Sampling Method: Non-Probability Sample

Study Population
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 member 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.

Contacts and Locations

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT02327845

Contact: Michael Benatar, MBChB, MS, DPhil 305-243-4015
Contact: Sumaira Hussain 1-844-837-1031


United States, California

University of California San Diego (UCSD) Recruiting
Contact: Ivy Chippendale Cass
Telephone: 858-246-1319
San Diego, California, United States, 92093
Principal Investigator: John Ravits, MD

California Pacific Medical Center (CPMC) Recruiting
San Francisco, California, United States, 94115
Principal Investigator: Jonathan Katz, MD

United States, Florida

University of Miami Recruiting
Contact: Sumaira Hussain (project manager)
Telephone: 305-243-8487
Miami, Florida, United States, 33136
Contact: Sumaira Hussain 1-844-837-1031
Principal Investigator: Michael Benatar, MBChB, MS, DPhil

United States, Iowa

University of Iowa Recruiting
Contact: Jeri Sieren
Telephone: 319-356-8744
Iowa City, Iowa, United States, 52242
Principal Investigator: Andrea Swenson, MD

United States, Kansas

Kansas University Medical Center (KUMC) Recruiting
Contact: Katy Johns (Coordinator)
Telephone: 913-945-9926
Kansas City, Kansas, United States, 66160
Principal Investigator: Richard Barohn, MD

United States, North Carolina

Wake Forest University Not yet recruiting
Winston-Salem, North Carolina, United States, 27157
Principal Investigator: James Caress, MD

United States, Ohio

Cleveland Clinic Not yet recruiting
Cleveland, Ohio, United States, 44195
Principal Investigator: Erik Pioro, MD

United States, Texas

University of Texas Southwestern (UTSW) Recruiting
Contact: Steve Hopkins
Telephone: 214-648-9275
Dallas, Texas, United States, 75390
Principal Investigator: Jaya Trivedi, MD

University of Texas Health Science Center San Antonio (UTHSCSA) Recruiting
San Antonio, Texas, United States, 78229
Principal Investigator: Carlayne Jackson, MD

United States, Virginia

University of Virginia (UVA) Recruiting
Contact: Amruta Joshi
Telephone: 434-982-0293
Charlottesville, Virginia, United States, 22908
Principal Investigator: Ted Burns, MD


Eberhard Karls University of Tübingen Not yet recruiting
Tübingen, Germany
Principal Investigator: Rebecca Schule, MD

Sponsors and Collaborators
University of Miami
National Institute of Neurological Disorders and Stroke (NINDS)
National Center for Advancing Translational Science (NCATS)
St. Jude Children's Research Hospital
More Information

Responsible Party: Michael Benatar, Chief of the Neuromuscular Division, Professor of Neurology, University of Miami Identifier: NCT02327845 History of Changes
Other Study ID Numbers: U54NS092091
Study First Received: December 24, 2014
Last Updated: July 7, 2016
Health Authority: United States: Institutional Review Board