CRC-SCA

Clinical Research Consortium for the Study of Cerebellar Ataxia

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

Study Co-Chair

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

Study Co-Chair

Vikram Shakkottai, MD, PhD
University of Michigan Medical School,
Ann Arbor, MI

Study Co-Chair

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

Lead Coordinator

Operations Liaison

Database Liaison

Site Project Manager

Site Map

Sites & Coordinators

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:
Zsa Zsa Brown
zsa.zsa.brown@
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:
Daven Crossland
Daven.crossland@ucsf.edu

University of Chicago

Dr. Christopher Gomez

Lead Coordinator:
Hannah Casey
hannahcasey@uchicago.edu

University of Florida

Drs. SH Subramony and Matthew Burns

Lead Coordinator:
Jamie Bolling 
Jamie.Bolling@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

Pending Sites

Swedish Neuroscience Institute

Seattle, WA

University of Montreal

Montréal, Québec, Canada

University of Pennsylvania

Philadelphia, PA

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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