CureDRPLA Global Patient Registry
Recruiting
Observational Study
DRPLA
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 0 – 100
- Sex
- Any
- Study type
- Observational
- Participants needed
- 100 (estimated)
- Sponsor
- CureDRPLA · Other
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About This Trial
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 …
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Individuals of all ages with a self-reported diagnosis of DRPLA.
* Understand and sign the informed consent form (IFC). Participants who lack the capacity to consent (e.g. cognitively impaired individuals) will require consent from the legal authorized representative, and the …
Contacts
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