Ataxia UK and the US Foundation CureDRPLA are the lead organisations of the CureDRPLA Global Patient Registry. This Registry aims to collect data on as many Dentatorubral-pallidoluysian atrophy (DRPLA) patients as possible. The Registry collects patient-reported data on individuals affected with DRPLA once a year to understand how the condition changes over time. Having a patient registry is essential for collecting information to better understand DRPLA development and monitoring the quality of health. This Registry collects very useful information necessary for future clinical trials.
At the time of initial enrolment, participants will be asked to read the terms of the Registry. If you agree to participate we will ask you to complete a series of questionnaires to include information on demographics, specifics of diagnosis, medical history, research, functional mobility, quality of life, and health economics. Please note that when completing the Registry a separate account needs to be set up for each person affected with DRPLA. You will receive email reminders to complete the Registry once a year.
With your permission, the Registry will share information on participants with patient/advocacy groups, scientists, industry and other qualified researchers in an anonymized and aggregated form that will prevent identification of individual participants.
The CureDRPLA Global Patient Registry was created with input from CureDRPLA and Ataxia UK representatives, DRPLA patients and caregivers, clinicians with DRPLA expertise, neurologists, and industry representatives. The Registry in now available in English but to encourage DRPLA patients worldwide to register it will soon be available in French, Italian, Japanese, Korean, and Portuguese. This Registry has been reviewed and approved by WCG IRB, an international ethics review board company
If you would like to participate please go to: https://curedrpla.org/en/global-patient-registry/
There is a User Guide to help you navigate the Registry: https://curedrpla.org/dev/wp-content/uploads/2021/03/CureDRPLA-GPR_User-Guide_v3.pdf
If you have any questions feel free to contact Silva Prades (Ataxia UK Research Officer) on firstname.lastname@example.org
Date posted: 26/03/2021