CureDRPLA Global Patient Registry

01/02/2024
25/03/2026
Data source
Human
Disease registry
Other
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Population Qualitative Data

Population age groups

  • Paediatric Population (< 18 years)
    • Neonate
      • Preterm newborn infants (0 – 27 days)
      • Term newborn infants (0 – 27 days)
    • Infants and toddlers (28 days – 23 months)
    • Children (2 to < 12 years)
    • Adolescents (12 to < 18 years)
  • Adult and elderly population (≥18 years)
    • Adults (18 to < 65 years)
      • Adults (18 to < 46 years)
      • Adults (46 to < 65 years)
    • Elderly (≥ 65 years)
      • Adults (65 to < 75 years)
      • Adults (75 to < 85 years)
      • Adults (85 years and over)

Estimated percentage of the population covered by the data source in the catchment area

The prevalence of DRPLA is not well known. Over time, this registry hopes to inform about the prevalence of DRPLA in different countries. Individuals with DRPLA of any age can participate in this registry.

Description of the population covered by the data source in the catchment area whose data are not collected (e.g., people who are registered only for private care)

Global, open to anyone with DRPLA diagnosis
Family linkage

Family linkage available in the data source permanently or can be created on an ad hoc basis

Ad hoc
Population

Population size

40

Active population size

35
Median observation time

Median time (years) between first and last available records for unique individuals

1.00

Median time (years) between first and last available records for unique active individuals (alive and currently registered)

1.00