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BREAKING NEWS: FDA Approves First Treatment for Friedreich’s Ataxia. LEARN MORE!

National Ataxia Foundation

2023 AAC

Participate in Ataxia Research

You have the power to accelerate treatment development.

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.

Research Studies

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+

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+

Ataxia Patient Registry

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.

About CoRDS

How to Enroll in the CoRDS Registry

Brain Donation Program

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.

Natural History Study

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.

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