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Help Develop New Treatments

Researchers need help from people with Ataxia to look for a cure and develop new treatments. Here are things that you can do to be a part of the fight against Ataxia.

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 on the appropriate patient registry listed below (you can be included on more than one patient registry.)

Ataxia Patient Registry at CoRDS 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

Clinical Trials

Participating in a 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 in a clinical trial is a deeply personal choice to make. Look into risks and benefits of each trial before enrolling. The following links are great resources for finding research studies that are looking for volunteer participants.

The following links will provide information about participating in a clinical trial.

Research Participation

During the COVID-19 pandemic, some in-person research studies are not being scheduled at this time. However, some studies are currently recruiting research participants for their studies and scheduling future appointments. Safety of research participants is of the utmost importance and appropriate guidelines are being followed. Please contact the institute listed for more details. Thank you.

The National Ataxia Foundation 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.

International Research Participation

DRPLA Patients and Families Needed for Important Research Study 

20 DRPLA patients and families in the UK/Europe are needed to work with Ataxia UK and CureDRPLA to develop DRPLA blood-based biomarkers of disease progression. If you are a DRPLA family who may be interested in being part of this IRB approved study, or a physician who sees patients with DRPLA, please email:

Dr. Henry Houlden
Professor of Neurology and Neurogenetics,
UCL Institute of Neurology and
The National Hospital for Neurology and Neurosurgery,
Queen Square, London WC1N 3BG.

CRC-SCA 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). The institutions and principle investigators that are in the CRC-SCA are listed below:

Columbia University

Dr. Sheng Han Kuo

Lead Coordinator:
Nadia Amokrane

Emory University

Dr. George “Chip” Wilmot

Lead Coordinator:
Carole Seeley

Houston Methodist Research Institute

Dr. Tetsuo Ashizawa

Lead Coordinator:
Titilayo Olubajo

Johns Hopkins University

Drs. Liana Rosenthal and Chiadikaobi Onyike
Lead Coordinator:
Ann Fishman

Massachusetts General

Dr. Jeremy Schmahmann

Lead Coordinator:
Jason MacMore

Northwestern University

Dr. Puneet Opal

Lead Coordinator:
Alejandro Hernandez

University of California - Los Angeles

Dr. Susan Perlman

Lead Coordinator:
Aaron Fisher

University of California - San Francisco

Drs. Cameron Dietiker and Daniel Geschwind
Lead Coordinator:
Daven Crossland

University of Chicago

Dr. Christopher Gomez

Lead Coordinator:
Hannah Casey

University of Florida

Dr. SH Subramony

Lead Coordinator:
Jamie Bolling

University of Michigan

Drs. Henry Paulson and Vikram Shakkottai
Lead Coordinator:
Tasha Kaiser

University of Minnesota

Dr. Khalaf Bushara

Lead Coordinator:
Diane Hutter

University of South Florida

Dr. Theresa Zesiewicz

Lead Coordinator:
Paige Ricketts

University of Utah

Dr. Stefan Pulst

Lead Coordinator:
Pattie Figueroa

The success of the natural history study is dependent on participation by individuals who have those forms of SCA. If you have SCA 1, 2, 3, 6 or 7 (and SCA 8 and 10 at some sites) and are a patient at one of those sites or can travel to a site, please contact the clinic office for more information. You may also contact Sue Hagen at NAF at 763-231-2742 or for more information.

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 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.

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