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

An estimate of the global prevalence of LGMDR9 is 1-9 per 100,000 individuals. A founder FKRP gene mutation originated in Scandinavia, leading to a regional increase in prevalence of LGMDR9 to approximately 1 per 50,000 individuals. There are 921 participants in the Registry, the majority of whom report a diagnosis of LGMDR9, which very approximately represents 1% of the affected 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 affected individuals worldwide who have either (a) never heard of the registry or (b) decided not to participate
Family linkage

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

Ad hoc
Population

Population size

921

Active population size

550

Population by age group

Age group Population size Active population size
Paediatric Population (< 18 years)
138
121
Preterm newborn infants (0 – 27 days)
0
0
Term newborn infants (0 – 27 days)
0
0
Infants and toddlers (28 days – 23 months)
2
2
Children (2 to < 12 years)
58
54
Adolescents (12 to < 18 years)
78
65
Adults (18 to < 46 years)
448
381
Adults (46 to < 65 years)
262
225
Elderly (≥ 65 years)
73
58
Adults (65 to < 75 years)
52
44
Adults (75 to < 85 years)
21
14
Adults (85 years and over)
0
0
Median observation time

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

3.00

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

4.00