CureDRPLA is funding this study to better understand the symptoms of DRPLA and how they change over time. It also aims to identify measurable indicators that could predict progression and responsiveness to treatments in future clinical trials.
This study collects health information over three years, requiring annual appointments where the neurologist will do some clinical assessments (e.g. ataxia scales, brain MRI, blood collection, etc.). The study is recruiting people with and without DRPLA to allow for comparison between these groups. Recruitment for the study will continue until September 2026. After that, the study will close to allow for analysis of all the information collected. If you are interested in participating, please visit our website for more information and contact details.
The study is led by researchers in London and North Carolina and it is expanding to include participants from Spain, Italy, South Korea, Austria, France, Turkey, and more. So far, 69 people with DRPLA and 37 people without DRPLA have been enrolled in this study. We extend our heartfelt thanks to all the families and healthcare professionals participating in this study.
LIST OF SITES THAT ARE CURRENTLY RECRUITING PARTICIPANTS:
Prof. Paola Giunti at University College London site – you can find the recruitment flyer here. Contact details:
- Research Fellow: Dr. Hector Garcia-Moreno – hector.garcia-moreno@nhs.net
Dr. Shiloh-Malawsky at University of North Carolina site – you can find the recruitment flyer here. Contact details:
- Clinical Research Coordinator: Yulissa Gonzalez
- Phone: + 1 (919) 843-3516 / Email: yulissa_gonzalez@neurology.unc.edu
If you live outside the UK and the USA, you may still be able to participate in this study! If that is your case contact the Study Coordinator, Silvia Prades, at silvia.prades@curedrpla.org