Dear Hungarian Neurological Society,

Ataxia UK and CureDRPLA have launched the CureDRPLA Global Patient Registry, the only existing registry of dentatorubral-pallidoluysian atrophy (DRPLA) patients. DRPLA is an ultra-rare form of inherited ataxia and we were wondering if you could help us promote this registry among your members, some of them will follow DRPLA patients.

This registry is designed to house patient-entered data; when joining the registry, participants will be asked to answer questions about the DRPLA diagnosis, medical history, activities of daily living, etc. The registry is available in English, French, Italian, Portuguese, Japanese and Korean.

We would highly appreciate it if you could share this information with your members. If you agree, I could send you a draft text to publicise this registry. The registry has been IRB-approved and all the information can be found here: https://curedrpla.org/en/global-patient-registry/

In addition, we are also setting up a natural history and biomarkers study for DRPLA with study sites in the UK, Japan and USA. Promoting this registry now will also help us to identify potential participants for the natural history and biomarkers study.

Many thanks in advance for your time. 

Kind regards, 

Silvia

Silvia Prades, PhD

Research Manager

DRPLA Research Programme