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

Studies estimate that between one and two people in every 100,000 worldwide are living with spinal muscular atrophy (SMA) at any one time. The incidence of SMA is estimated as one in every 10,000 babies worldwide are born with a type of SMA. There are 669 participants in the Registry which very approximately represents 46% of the SMA population in the UK and Ireland.

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 nationwide 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

669

Active population size

421

Population by age group

Age groupPopulation sizeActive population size
Paediatric Population (< 18 years)
245
151
Infants and toddlers (28 days – 23 months)
5
5
Children (2 to < 12 years)
147
101
Adolescents (12 to < 18 years)
93
45
Adults (18 to < 46 years)
264
163
Adults (46 to < 65 years)
110
82
Elderly (≥ 65 years)
50
25
Adults (65 to < 75 years)
26
16
Adults (75 to < 85 years)
21
9
Adults (85 years and over)
3
0
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)

4.00