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Summary
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.
Official title: CureDRPLA Global Patient Registry for Individuals With Dentatorubral-pallidoluysian Atrophy (DRPLA)
Key Details
Gender
All
Age Range
0 Years - 100 Years
Study Type
OBSERVATIONAL
Enrollment
100
Start Date
2021-03-01
Completion Date
2031-11-01
Last Updated
2026-03-17
Healthy Volunteers
No
Conditions
Locations (1)
CureDRPLA
New York, New York, United States