Cohort profile: The Halmstad University Register on Pupils with Intellectual Disability

Area of Science:

• Social Sciences
• Public Health
• Disability Studies

Background:

• Global data on living conditions for individuals with intellectual disabilities (ID) is limited.
• Existing registers often lack comprehensiveness or fail to identify all individuals with ID.
• The Halmstad University Register on Pupils with ID (HURPID) was created in Sweden to address this data gap.

Purpose of the Study:

• To detail the creation, structure, and content of the HURPID database.
• To validate the accuracy and completeness of the HURPID register.
• To illustrate the register's utility in studying the lives of individuals with ID.

Main Methods:

• Data compiled from individuals leaving the Swedish Upper Secondary School for pupils with ID (USSID) between 2001-2020.
• Key data points include personal identity number, gender, educational program, school location, and graduation year.
• HURPID was linked with other national registers for comprehensive analysis.

Main Results:

• The HURPID database includes 26,910 individuals (born 1973-2003).
• Register linkages have provided insights into employment, psychiatric conditions, mortality, substance use, crime, and victimization.
• HURPID exhibits high completeness for working-age individuals with ID in Sweden.

Conclusions:

• HURPID is one of the world's most extensive and complete registers for individuals with ID.
• The register enables longitudinal tracking of adolescents with ID.
• It offers a unique international resource for understanding the living conditions of people with intellectual disabilities.