Population Qualitative Data

Population age groups

Paediatric Population (< 18 years)
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)
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

Since it is a rare disease, it is hoped that as many patients as possible will be included.

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)

Internation-wide
Family linkage

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

Ad hoc
Population

Population size

631

Active population size

629

Population by age group

Age groupPopulation sizeActive population size
Paediatric Population (< 18 years)
422
420
Preterm newborn infants (0 – 27 days)
0
0
Term newborn infants (0 – 27 days)
0
0
Infants and toddlers (28 days – 23 months)
6
6
Children (2 to < 12 years)
280
278
Adolescents (12 to < 18 years)
136
136
Adults (18 to < 46 years)
171
171
Adults (46 to < 65 years)
15
15
Elderly (≥ 65 years)
3
3
Adults (65 to < 75 years)
3
3
Adults (75 to < 85 years)
0
0
Adults (85 years and over)
0
0
Median observation time

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

12.00

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

12.00