Patients and Families

Research Collaborators

Individuals who are diagnosed with Ataxia are experts in their own disease. There are many members of the research team but individuals with Ataxia are experts by experience. Affected individuals are not research subjects but are research collaborators. It is not possible to learn new information about a disease unless the people who have those diseases are fully committed to participate in research. That allows new information to be gathered that will enable researchers to better understand the disease and develop treatments and therapies for Ataxia. 

Why should I participate?

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 funding from the National Ataxia Foundation and the Macklin Foundation,  the Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA), a natural history study is occurring for SCAs 1, 2, 3, 6 and 7 (and SCA 8 and 10 at some sites).

How can I participate?

The CRC-SCA Natural History study continues to recruit research collaborators across the country. In order to be a part of this study, please note the inclusion criteria:

  • Age 6 years and above (no upper limit) 
  • Presence of symptoms and/or signs of ataxia. This type of participant may enroll with either a genetic confirmation or a diagnosis of SCA 1,2,3,6,7,8, and 10 in themselves or a family member. 
  • Pre-Symptomatic participants are allowed if they can provide genetic testing confirmation. 
  • Willingness to participate in the study and ability to give informed consent. 
  • For plasma ONLY: Must have molecular diagnosis of SCA 1, 2 ,3 ,6, or 7. 
  • For CSF ONLY: Must have molecular diagnosis of SCA 1, 2, 3, 6, or 7 and be age 18 or above

If interested, or if you have specific questions about eligibility please contact the site coordinator nearest you. View our map and coordinator list here. Research collaborators who are willing and able to undergo a lumbar puncture to donate cerebrospinal fluid (CSF) for research will be given a monetary stipend.

CoRDS Ataxia Patient Registry

Patient Registries are essential tools for Ataxia researchers and pharmaceutical companies. The purpose of a patient registry is to advance the development of treatments for a disease by connecting researchers and pharma partners 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 enroll in the CoRDS registry. Please use this link to enroll.

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Your gift to Ataxia research DOUBLED through December 31st

Contributions to the Annual Research Drive help NAF fund the very best Ataxia research. An anonymous donor will match every dollar donated during this campaign, up to $50,000.

Your donation means more Ataxia research! Thank you for supporting NAF as we seek effective treatments for Ataxia.

Thank you so much!