The United Kingdom National Registry for Myotonic Dystrophy

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 847 patients so around 10% of expected UK DM 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

988

Active population size

847

Population by age group

Age group Population size Active population size
Paediatric Population (< 18 years)
70
64
Preterm newborn infants (0 – 27 days)
0
0
Term newborn infants (0 – 27 days)
0
0
Infants and toddlers (28 days – 23 months)
4
4
Children (2 to < 12 years)
30
27
Adolescents (12 to < 18 years)
36
33
Adults (18 to < 46 years)
357
325
Adults (46 to < 65 years)
379
325
Elderly (≥ 65 years)
182
133
Adults (65 to < 75 years)
130
97
Adults (75 to < 85 years)
50
34
Adults (85 years and over)
2
2
Median observation time

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

48.00

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

46.00