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.
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
Patients with ALS or a related neurodegenerative disorder, including FTD, HSP, PLS, PMA and MSP. Select family members of affected participants.
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.
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 ClinicalTrials.gov identifier: NCT02327845
Contact: Michael Benatar, MBChB, MS, DPhil 305-243-4015
Contact: Sumaira Hussain 1-844-837-1031 email@example.com
United States, California
University of California San Diego (UCSD) Recruiting
Contact: Ivy Chippendale Cass
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)
Miami, Florida, United States, 33136
Contact: Sumaira Hussain 1-844-837-1031 firstname.lastname@example.org
Principal Investigator: Michael Benatar, MBChB, MS, DPhil
United States, Iowa
University of Iowa Recruiting
Contact: Jeri Sieren
Iowa City, Iowa, United States, 52242
Principal Investigator: Andrea Swenson, MD
United States, Kansas
Kansas University Medical Center (KUMC) Recruiting
Contact: Katy Johns (Coordinator)
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
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
Charlottesville, Virginia, United States, 22908
Principal Investigator: Ted Burns, MD
Eberhard Karls University of Tübingen Not yet recruiting
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
Responsible Party: Michael Benatar, Chief of the Neuromuscular Division, Professor of Neurology, University of Miami
ClinicalTrials.gov 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
The CFC or Combined Federal Cam-paign is a fundraising campaign the Federal Government offers its employ-ees to participate with each year. It begins Sept 1st and goes through Dec 15th. Federal employees are allowed to pick from over 200 registered nonpro-fits to contribute to. Many CFC fairs will be held at Federal facilities throughout the campaign. This allows employees to learn about the nonprofits and make their selections.
Please let friends and family members who are Federal employees know they can choose the Spastic Paraplegia Foun-dation to donate to. The SPF CFC num-ber is 12554. The following are exam-ples of Federal employees: law enforce-ment, mail personnel, VA or Veteran’s Administration employees, Medicare, Medicaid, military and many types of governmental jobs. If donors want to know more, please have them log on to
If you have any questions or sugges-tions, please contact Jim Sheorn at email@example.com or 615-479-7369.
Please help us generate more financial resources for research.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.