Overview and Accreditation Benefits
DRPLA is a complex and heterogeneous condition that can impact many aspects of everyday life, thus individuals affected and their families require access to specialized care to better understand this condition and find the best way to manage it while a treatment becomes available. CureDRPLA has launched this initiative to award an accreditation of “DRPLA Centers of Excellence” to those neurologists who have experience in DRPLA care and commit to supporting the work of our organization. In addition to providing expert clinical care and identifying the various needs of those diagnosed with DRPLA, the Centers must have an ongoing interest in research into DRPLA. With this initiative, we aim to help families more easily identify clinical experts in DRPLA for their healthcare needs.
The DRPLA Centers of Excellence will receive the following benefits:
- Join a network of DRPLA experts to provide support and guidance to individuals with DRPLA. Take advantage of new collaboration opportunities for improving clinical care and research.
- Recommended on the CureDRPLA and Ataxia UK websites as a DRPLA Center of Excellence.
- An award certificate will be sent (it can be displayed in the clinic for awareness).
- This designation may be used in both internal and external communications and applications.
- Receive updates on research and clinical projects, funding opportunities, events and other relevant information.
To become a DRPLA Center of Excellence, the clinician(s) applying must fulfill the designation criteria and submit an application for approval.
Criteria for DRPLA Center of Excellence Accreditation
Clinical Care
- Each Center must have at least one neurologist with experience in DRPLA and specialized training in movement disorders, ataxia or epilepsy. In this context ‘experience in DRPLA’ is defined by having seen at least four individuals with a DRPLA diagnosis throughout their professional career.
- Currently provide clinical care for at least two individuals with DRPLA annually.
- Provide information about DRPLA and refer patients and families to CureDRPLA for additional information on research and peer support.
- Offer referrals to other specialist clinical services to support all aspects of DRPLA (e.g., physiotherapists, genetic counseling and testing, family planning and reproductive health, physical and occupational therapy, speech therapy, social services, etc.).
- Follow-up visit is offered at least once a year.
- Evidence of a system for providing both medical information and support/advice for people with DRPLA and their caregivers between clinic visits.
Community Education and Outreach
- Engage in educational and/or outreach events for individuals with DRPLA, caregivers and families (e.g., participate in meetings or interviews for social media).
- Promote engagement in research studies and clinical trials.
- Willingness to attend meetings with representatives of CureDRPLA to learn more about the foundation’s projects and funding opportunities.
Research Experience and Interest
- Involvement of clinician(s) with a track record of research on DRPLA and other relevant conditions or who can provide evidence that they keep updated on recent developments in DRPLA research.
- Willingness to inform their patients of opportunities to participate in research projects that have been ethically approved.
Accreditation Process
Neurologist(s) seeking a DRPLA Center of Excellence accreditation must fill in the application form and submit it to silvia.prades@curedrpla.org.
We accept applications all year round and it is open to applicants from all countries. If approved, the accredited centers will maintain this designation for three years (see requirements in the application form) from the date of approval. To renew the accreditation, they will be required to resubmit a proposal for review.
On the application form you can find the review process and the requirements post-approval.
Accredited Institutions
The University of North Carolina at Chapel Hill
The DRPLA Center of Excellence was accredited to Dr Yael Shiloh-Malasky and Dr Zheng (Jane) Fan from the University of North Carolina at Chapel Hill on June 6, 2024. Clinical Services Adult and pediatric neurologists with expertise in neurogenetics, epilepsy and...