CureDRPLA Global Patient Registry

Conditions

• DRPLA

Eligibility Criteria

Sex

ALL

Age

0 Years - 100 Years

Healthy Volunteers

Not accepted

Study Details

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 Dates

First listed

Aug 5, 2022

Start date

Mar 1, 2021

Status verified

Mar 2026

Primary completion

Nov 1, 2031

Completion

Nov 1, 2031

Study Design

Enrollment

100 participants (estimated)

Arms

• Arm: Individuals with DRPLA
  This registry is for people with a diagnosis of Dentatorubral-pallidoluysian atrophy (DRPLA)

Primary Outcome Measure

Patient- or caregiver-filled questionnaires [ Time Frame: 1 year ]

Locations (1)

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