CureDRPLA Global Patient Registry

Recruiting now

Conditions studied: DRPLA

In brief

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.

Key facts

Study ID

NCT05489393

Run by

CureDRPLA

People needed

100

Starts

2021-03-01

Expected to finish

2031-11-01

Last updated by the study team

2026-03-17

Who can join

Age: any, up to 100. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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 assent of the subject will be obtained to the extent compatible with their capacity. Participants at age 12 to age of consent will require assent along with the consent of their parent or legal guardian.

You may not qualify if…

• Ataxia conditions other than DRPLA.
• Failure to sign the IFC (and assent form, as needed).

Where it is running

• CureDRPLA — New York, New York, United States (enrolling)

Full record on ClinicalTrials.gov

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