Actively Recruiting
CureDRPLA Global Patient Registry
Led by CureDRPLA · Updated on 2026-03-17
100
Participants Needed
1
Research Sites
556 weeks
Total Duration
On this page
Sponsors
C
CureDRPLA
Lead Sponsor
A
Ataxia UK
Collaborating Sponsor
AI-Summary
What this Trial Is About
The objective of the CureDRPLA Global Patient Registry is to establish a longitudinal database of patient-reported data on individuals affected with Dentatorubral-pallidoluysian atrophy (DRPLA) from anywhere in the world. The CureDRPLA Global Patient Registry will address patient needs by: * Expanding patient engagement by documenting quality of life outcomes. * Providing anonymized data to the DRPLA research community on patient experience with the disease and priorities for treatment. * Connecting DRPLA patients with opportunities to participate in clinical research.
CONDITIONS
Official Title
CureDRPLA Global Patient Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Individuals of all ages with a self-reported diagnosis of DRPLA.
- Understand and sign the informed consent form.
- Participants who cannot consent will need consent from a legally authorized representative.
- Participants aged 12 to the age of consent must provide assent along with parental or guardian consent.
You will not qualify if you...
- Ataxia conditions other than DRPLA.
- Failure to sign the informed consent form or assent form when needed.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
CureDRPLA
New York, New York, United States, 11231
Actively Recruiting
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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