Skip to content

Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now.  LEARN MORE!

Ataxia Centers of Excellence

A designation to recognize centers that provide comprehensive care and services for individuals affected by Ataxia and their families.


Comprehensive Clinical Care

  • Must have a coordinated ataxia clinical care team to provide comprehensive multidisciplinary ataxia care that includes: 
      • at least two neurologists with specialized training/experience in ataxia/movement disorder


      • at least .5 FTE combined dedicated clinical time to ataxia between neurologist and Advanced Practice Practitioners 

  • Offer Referral Services, such as, but not limited to:
    • Genetic Counseling and Testing
    • Urology
    • Cardiology
    • Ophthalmology
    • Psychiatry/Psychology
    • Family Planning & Reproductive Health
    • Trained Rehabilitation Specialists (e.g., Physical and Occupational Therapy, Speech Language Pathology)
    • Social Services
  • Provide clinical care for at least 30 ataxia patients annually and patients must span a variety of ataxia types.

Professional Training and Research

  • Provide clinical education and training to health care professionals (e.g., fellows, nurses, PTs, social workers) through formal rotations and/or fellowships.
  • Must have a designated clinical coordinator who dedicates some time to ataxia and demonstrate active engagement in ataxia clinical trials and/or research studies.

Community Education and Outreach

  • Engage in community-based educational or outreach events for individuals with ataxia, care partners and families (e.g., participate in fundraisers, patient meetings, support groups).
  • Promote patient engagement in clinical research studies and clinical trials.


NAF accepts applications two times per year. If approved, designated centers will maintain their recommendation for five years from the date of approval, at which time they will be required to re-submit a proposal for review. Selected sites must meet annual reporting requirements to maintain ACE designation.  

If you have any questions, email Kelsey Trace at


March 1, 2024 –
May 31, 2024

June 1, 2024 –
September 30, 2024


End of Business Day –
May 31, 2024

End of Business Day –
September 30, 2024


July 15, 2024

November 15, 2024


August 2024 /
July 2029

December 2024 /
November 2029



  • NAF ACE branded plaque for public display in clinic.
  • Approval to use designation in institutional or clinic promotional materials and external communications or applications.
  • Recommendation to patients on NAF website as an Ataxia Center of Excellence.
  • Listed in NAF-recommended clinical trial site registry to be provided to NAF industry partners.
  • Regular updates on new and ongoing clinical trials, referral programs, grant opportunities, and pertinent updates on ataxia standard of care.
  • Become part of a network of ataxia clinical experts that can provide support, guidance, and new opportunities for collaboration for improved ataxia clinical care and research.

Requirements After Designation as NAF Ataxia Center of Excellence

  1. Annual Patient Population Report: The purpose of this report is to better understand the regional distribution of ataxia patients and to provide guidance for industry partners on site selection for clinical trials. This report will require each center to enter the number of patients with specific ataxia disorders that were seen in the previous year. No other clinical or demographic information will be required about patients (e.g. 7 unique SCA1 patients seen in 2022). A templated report will be provided to each designated center and the first report will be due 13 months after the designation start date.
  2. Annual Clinical Study and Trial Report: The purpose of this report is to assist NAF in providing guidance and recruitment material for our patient membership seeking participation in clinical research and trials. Centers will provide an annual summary report of ongoing clinical research and trials at your site. The first report will be due 13 months after the designation start date.
  3. Participate in at least one local or virtual patient support group per year.
  4. Provide current contact information of clinic lead neurologists for periodic NAF communications.


Applications will be reviewed by a committee composed of NAF staff, representatives from the NAF Medical Research and Advisory Board, an industry representative from NAF’s Drug Development Collaborative, and a patient representative. All applications will be scored, using the following criteria:

  1. The quality of the overall application and services provided.
  2. Engagement in clinical research and trials.
  3. Geographic diversity.
  4. History of commitment to NAF Community Outreach and Education OR demonstration of plan to commit to NAF Community Outreach and Education.

The scoring of applications is part of an internal review process. Therefore, scores will not be shared with any site applying for designation, regardless of whether the site is given designation. Following review of the application, applicants not selected for designation may request a virtual meeting to discuss avenues to strengthen future applications.


If you have any questions about NAF’s Ataxia Center of Excellence designation, contact our Research Services Director, Kelsey Trace, at

Print Friendly, PDF & Email
Translate »

Join the Ataxia community today!

Become a free member for exclusive content from NAF.