Mobilizing a Community for Ataxia Treatments: The Importance of the Ataxia Patient Registry

Ataxia Patient Registry1

A Community Mobilized Toward Treatments

The National Ataxia Foundation (NAF) is deeply committed to finding treatments and cures for Ataxia. Since its inception in 1957, NAF has strived to mobilize resources and support from the community to advance research efforts.  Sue Hagen, the Patient and Research Services Director, emphasizes the critical role of patient involvement in achieving these goals.  The Ataxia community’s dedication is evident in their participation in conferences, fundraising activities, and awareness campaigns, significantly contributing to NAF’s mission.

How the Ataxia Patient Registry Affects Research

A crucial component of these efforts is the CoRDS Ataxia Patient Registry.  Pharmaceutical companies rely on robust patient registries to recruit participants for clinical trials, which are essential for developing and approving new treatments.  The NAF diligently tracks enrollment numbers, understanding that a well-populated registry is a key factor in attracting clinical trials.

As of June 2019, the registry has 1,881 enrollees, just 138 short of the 2019 goal.  Hagen highlights the need to exceed this target, emphasizing the potential for many more participants given the estimated 150,000 individuals affected by Ataxia in the U.S.

Facts About the Ataxia Patient Registry (as of 2019)

  • Top Enrolled States:  California (171), Texas (103)
  • Global Participation:  254 enrollees from countries outside the U.S., with Canada leading
  • Youth Enrollment:  104 participants under 11 years old
  • SCA Subtypes:  SCA3 (227 individuals), SCA6 (160 individuals)

NAF extends gratitude to the 1,881 individuals who have enrolled and encourages others to join the registry. For assistance, individuals can contact the CoRDS staff at cords@sanfordhealth.org or 1 (877) 658-9192.

Find research studies and clinical trials that are currently recruiting

We would like to the National Ataxia Foundation for sharing this inspirational story with us. 

Please share your thoughts and/or comments on this or any other article.  And if you would like to get involved and share your experience with Ataxia, please contact us.  Join our community today.  A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness.  Experience transformative storytelling and share your story to inspire positive change.


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