International Registries for Rare Conditions Affecting Sex Development & Maturation (SDMregistries; formerly known as I-DSD/I-CAH/I-TS /I-HH)

First published 01/06/2026

Last updated 01/06/2026

Data source

Human

Disease registry

Population Qualitative Data

Population age groups: In utero

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: Information on patients who consented to the registry can only entered and used for research.

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): Information on patients who have not consented to the registry can only entered and used for research.

Family linkage

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

Population

Age group	Population size	Active population size
Paediatric Population (< 18 years)	4978	4973
Adult and elderly population (≥18 years)	6191	6185

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): 3.00

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