The United Kingdom Facioscapulohumeral Dystrophy Patient Registry

01/02/2024
17/10/2024
Data source
Human
Disease registry
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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

Disease prevelance is uncertain but estimated at 1 in 8,000 - registry currently has 906 patients so around 11% of expected UK FSHD population

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)

Any patients who have chosen not to self-register, or who are undiagnosed or unaware of the registry
Population

Population size

1133

Active population size

906

Population by age group

Age group Population size Active population size
Paediatric Population (< 18 years)
24
18
Preterm newborn infants (0 – 27 days)
0
0
Term newborn infants (0 – 27 days)
0
0
Infants and toddlers (28 days – 23 months)
0
0
Children (2 to < 12 years)
3
2
Adolescents (12 to < 18 years)
21
16
Adults (18 to < 46 years)
408
317
Adults (46 to < 65 years)
434
345
Elderly (≥ 65 years)
267
226
Adults (65 to < 75 years)
163
140
Adults (75 to < 85 years)
95
81
Adults (85 years and over)
9
5
Median observation time

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

51.00

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

52.00