Being recognized as a DRPLA Centre of Excellence is about much more than a title. 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.
Over the past year, this recognition has helped the UNC DRPLA Center of Excellence strengthen its reputation as a trusted source of expertise for people with DRPLA, families, and healthcare professionals seeking guidance on this rare condition.
The center continues to provide clinical care for individuals living with DRPLA while actively contributing to the DRPLA Natural History and Biomarkers Study. Over the past year, the center has completed study visits for three adults and five children with DRPLA who are enrolled in the study.
Alongside its research activities, the team has also played an important role in education and raising awareness through initiatives such webinars and collaborations with advocacy organizations. Dr Shiloh-Malawsky gave a presentation about the clinical aspects of DRPLA at a webinar organized by the National Ataxia Foundation and CureDRPLA.
One of the clearest impacts of the accreditation has been the growing number of enquiries from healthcare professionals and families seeking support. During the past year, the center provided information and guidance to clinicians, genetic specialists, and families involved in the care of several newly diagnosed individuals. These interactions have extended across multiple institutions and countries, demonstrating the increasing recognition of the center’s expertise and willingness to share knowledge with the broader medical community.
As knowledge of DRPLA remains limited in many parts of the world, access to specialist expertise is essential. The Centre of Excellence accreditation provides an important point of contact for patients, families, clinicians, and other healthcare professionals, helping to improve access to reliable information, informed clinical guidance, and coordinated care. You can find a list of all the centers accredited to date here.