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Natural history study and biomarker identification

To accelerate treatment development

Our Mission

To better understand the factors that determine disease progression among Cerebellar Ataxia with the goal of improving the understanding of the disease process, current treatments, and development of disease-modifying therapies

Patients and Families

Learn more about how you can get involved in the CRC-SCA Natural History Study.

Academic Research Community

General information for researchers working with Ataxia.

Interested Industry

Introductory information for industry partners that are exploring Ataxia therapies.

CRC-SCA Site Log In

For PI’s and Coordinators of CRC-SCA Sites.

CRC-SCA Natural History Study

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. The natural history of the SCAs and factors that may modify them are not completely understood. There is a need to define natural history in geographically distinct areas and develop additional methods to document progression that may be more sensitive and reliable. There is also limited knowledge of factors that may modify symptoms of SCA. 

The CRC-SCA natural history study and biomarker development is growing and adapting during this exciting new era in ataxia research as pharmaceuticals are advancing to therapy development for the ataxias. CRC-SCA plans to add specific clinical end-point assessments and biospecimen collection. This will increase the strength of this study allowing the consortium to partner with stakeholders in a meaningful way that will include patients as research collaborators.

The Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) continues to recruit research participants who have a confirmed diagnosis of SCA 1, 2, 3, 6, 7, 8 or 10. This is an opportunity for anyone in the United States with those forms of SCA at any stage of the disease to participate. Contact the research coordinator at a site near you to learn more about how you might be able to help in Ataxia research efforts to discover a treatment.

Study Leadership

Liana Rosenthal, MD, PhD

Study Co-Chair

Liana Rosenthal, MD, PhD
Johns Hopkins University,
Baltimore, MD


Study Co-Chair

Vikram Shakkottai, MD, PhD
University of Texas,      Southwestern Medical Center       

Dallas, TX

Sheng Han Kuo, MD

Study Co-Chair

Sheng-Han Kuo, MD
Columbia University,
New York City, NY

A. Fisher

Lead Coordinator

Database Liaison

Ann Fishman

Operations Liaison

Nadia Amokrane

Site Map

Sites & Coordinators

Columbia University

Dr. Sheng Han Kuo

Lead Coordinator:
Nadia Amokrane

Emory University

Dr. George “Chip” Wilmot

Lead Coordinator:
Jonna Seppa

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:
Zsa Zsa Brown 

University of California - Los Angeles

Dr. Susan Perlman

Lead Coordinator:
Aaron Fisher

University of California - San Francisco

Drs. Cameron Dietiker and Michael Geschwind

Lead Coordinator:
Daven Crossland

University of Chicago

Dr. Christopher Gomez

Lead Coordinator:
Cindy Jimenez

University of Florida

Drs. SH Subramony and Matthew Burns

Lead Coordinator:
Grace Lien 

University of Michigan

Dr. Henry Paulson

Lead Coordinator:
Sara Raymo

University of Minnesota

Dr. Khalaf Bushara

Lead Coordinator:
Diane Hutter

University of South Florida

Dr. Theresa Zesiewicz

Lead Coordinator:
Chase Kingsbury

University of Texas, Southwestern Medical Center

Dr. Vikram Shakkottai

Lead Coordinator:
Pheba Sunny

Pending Sites

Swedish Neuroscience Institute

Seattle, WA

University of Montreal

Montréal, Québec, Canada

Thank you

NAF extends its appreciation to the Gordon and Marilyn Macklin Foundation for awarding NAF a matching grant that provides support for the sites across the country who are recruiting participants in the Natural History Study. This clinical research collects the essential data needed to provide our industry partners information about disease progression which guides them as they work to develop treatments and design clinical trials. This effort is paramount to make the necessary advancements in pursuit of a treatment for Ataxia and, ultimately, a cure. 

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