BREAKING NEWS: FDA Approves First Treatment for Friedreich’s Ataxia. LEARN MORE!
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Participating in a research study or clinical trial is one way to take an active role in furthering understanding and treatment of Ataxia. It is also a way to get access to new treatment options before they are widely available. However, participating is a deeply personal choice to make. Look into risks and benefits of each study before enrolling. To learn more about the clinical trial process, visit PrepRARE Clinical Trial Readiness.
NAF is committed to providing information to those affected by Ataxia including the availability of research studies and clinical trials for the study of Ataxia.
Below you will find clinical trials and research opportunities for those with various types of Ataxia. These trials have been approved and monitored by an Institutional Review Board (IRB) to make sure the risks are as low as possible and are worth any potential benefits. Click the name of the study to see detailed information.
If you would like to have your study listed here or request help with recruitment, download the Research Recruitment Application or email research@ataxia.org with your question.
STUDY NAME
STUDY TYPE
CLINICAL TRIAL PHASE
CONDITION
LOCATION
AGE
Research Study
N/A
All Ataxias
Boston, MA, USA
Adult
18+
Interventional Trial
Phase 1
Friedreich’s Ataxia
New York, NY, USA
Adult
18+
Research Study
N/A
Spinocerebellar Ataxias, Sporadic Adult Onset Ataxia, Idiopathic Ataxia
Elkins Park, PA, USA
Adult
18+
Research Study
N/A
Spinocerebellar Ataxia and Other Ataxias
Remote
Adult
18+
Research Study
N/A
Spinocerebellar Ataxia (any subtype) and/or Cerebellar Degeneration of Unknown Origin
Remote
Adult
18+
Interventional Trial
Phase 0
Spinocerebellar Ataxias with and without genetic confirmation and Cerebellar Ataxia of unknown etiology
Baltimore, MD
Adult
18+
Research Study
N/A
Spinocerebellar Ataxias
Newark, NJ, USA
Adult
18+
Research Study
N/A
SCA1, SCA2, SCA3, SCA6 + individuals without a SCA
Remote
Adult
18+
Clinical Trial
Phase 1
SCA3
USA – 20 study locations
Adult
18+
Clinical Trial
2b/3
SCA3
USA – 23 study locations
Adult
18+
Research Study
N/A
SCA3
Ann Arbor, MI, USA
Adult
18+
Research Study
N/A
SCA7
Bethesda, MD, USA
Adult
18+
Research Study
N/A
SCA10
Houston, TX, USA
Adult
18+
Patient Registries are essential tools for Ataxia researchers. The purpose of a patient registry is to advance the development of treatments for a disease by connecting researchers with those who are affected with that disease. If you or a family member are affected by Ataxia or are at risk for Ataxia, we recommend that you sign up.
The CoRDS Registry was established to facilitate the establishment of rare disease registries for all rare diseases with a specific questionnaire for those with any type of ataxia or those at risk for Ataxia.
Donating tissue for medical research is an important and deeply personal decision. Proper planning can help ensure that wishes are accounted for and honored at the time of your or a loved one’s passing. Start your planning with the documents listed below. For additional information on tissue donation contact the National Ataxia Foundation at naf@ataxia.org or call 763-553-0020. If death is imminent or has occurred, rapid recovery is essential. Call 1-877-GoAtaxia (1-877-462-8294) as soon as death appears imminent or has occurred. Thank you for considering this important legacy gift.
One of the challenges in developing a treatment for a rare disease, such as Ataxia, is the lack of natural history studies. A natural history study collects data that shows how a specific disease progresses in individuals over time. Natural history studies are essential for developing clinical trial designs that will facilitate drug development. With the recent funding by the National Ataxia Foundation of the Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA), a natural history study will begin for SCAs 1, 2, 3, 6 and 7 (and SCA 8 and 10 at some sites). Learn how to join at our CRC-SCA page.
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest Ataxia news with our e-newsletter and Generations publication.
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