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.

CoRDS Registry at Sanford Research Video

Friedreich’s Ataxia Research Alliance Patient Registry for those with Friedreich’s ataxia.

The Fragile X Research Registry is for families who have individuals with Fragile X-associated tremor/ataxia syndrome (FXTAS) in the United States.

Patient Databases

Autosomal recessive spastic ataxia of Charlevoix-Saguenay ARSACS The purpose of this website is to create a new database for the SACSIN gene mostly reported in the province of Quebec, Canada.

Ataxia-Telangiectasia (A-T) Children’s Project Family Data Base is to help A-T families stay in touch with the A-T Children’s Project for information about clinical studies.

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

Due to the COVID-19 pandemic, in-person research studies are not being scheduled at this time, however, some studies are scheduling future appointments. Please contact the institute listed for more details.

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
Na2855@cumc.columbia.edu

Emory University

Dr. George “Chip” Wilmot

Lead Coordinator:
Carole Seeley
carole.seeley@emory.edu

Houston Methodist Research Institute

Dr. Tetsuo Ashizawa

Lead Coordinator:
Titilayo Olubajo
tolubajo@houstonmethodist.org

Johns Hopkins University

Drs. Liana Rosenthal and Chiadikaobi Onyike
Lead Coordinator:
Ann Fishman
ann.fishman@jhu.edu

Massachusetts General

Dr. Jeremy Schmahmann

Lead Coordinator:
Jason MacMore
jmacmore@mgh.harvard.edu

Northwestern University

Dr. Puneet Opal

Lead Coordinator:
Alejandro Hernandez
alejandro.hemandez1@
northwestern.edu

University of California - Los Angeles

Dr. Susan Perlman

Lead Coordinator:
Aaron Fisher
ADFisher@mednet.ucla.edu

University of California - San Francisco

Drs. Cameron Dietiker and Daniel Geschwind
Lead Coordinator:
Joseph Tallakson
Joseph.Tallakson@ucsf.edu

University of Chicago

Dr. Christopher Gomez

Lead Coordinator:
Hannah Casey
hannahcasey@uchicago.edu

University of Florida

Dr. SH Subramony

Lead Coordinator:
Amanda Cowsert Amanda.Cowsert@neurology.
ufl.edu

University of Michigan

Drs. Henry Paulson and Vikram Shakkottai
Lead Coordinator:
Tasha Kaiser
kaisert@med.umich.edu

University of Minnesota

Dr. Khalaf Bushara

Lead Coordinator:
Diane Hutter
hutte019@umn.edu

University of South Florida

Dr. Theresa Zesiewicz

Lead Coordinator:
Paige Ricketts
pricketts@usf.edu

University of Utah

Dr. Stefan Pulst

Lead Coordinator:
Pattie Figueroa
karlaf@genetics.utah.edu

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 susan@ataxia.org for more information.

Tissue 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. For additional information on tissue donation, contact the National Ataxia Foundation at naf@ataxia.org or call 763-553-0020. Thank you for considering this important legacy gift.

Brain Tissue Donation for Ataxia Research Fact Sheet (pdf)

Brain Donation Donor Information Fillable Form (pdf)

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