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Cohort profile: The Halmstad University Register on Pupils with Intellectual Disability
Halmstad University, School of Health and Welfare.ORCID iD: 0009-0004-6226-7509
Halmstad University, School of Health and Welfare.ORCID iD: 0000-0002-4773-1447
Karolinska Institutet, Stockholm, Sweden.
Halmstad University, School of Health and Welfare. La Trobe University, Melbourne, Australia.ORCID iD: 0000-0002-7519-6488
2026 (English)In: JCPP Advances, E-ISSN 2692-9384, Vol. 6, no 2, p. 1-15, article id e70028Article in journal (Refereed) Published
Abstract [en]

Background: Knowledge about the living conditions among people with intellectual disabilities (ID) is globally scarce. Even in countries with good access to registers, this is often partly due to the absence of a single, comprehensive, nationwide register of individuals with ID or the inability to identify all individuals with ID within existing registers. In Sweden, the Halmstad University Register on Pupils with ID (HURPID) was established to fill this gap. HURPID is based on the population that left the Swedish Upper Secondary School for pupils with ID (USSID) in 2001–2020. Most young people with ID in Sweden are expected to attend USSID. The aims of this paper were to describe the construction, structure, and content of HURPID, to validate the register, and to provide examples of what it has been used for.

Methods: Based on school leaving certificates or corresponding, personal identity number, gender, educational programme, municipality where the school was located, and graduation year were registered. HURPID has been linked with various registers in projects addressing research questions about the target group's living conditions.

Results: HURPID consists of 26,910 individuals (11,078 women, 15,832 men), born in 1973–2003. Through linkages, knowledge has been gained about occupational patterns, psychiatric comorbidity, mortality, substance use, criminality and victimisation.

Conclusions: HURPID demonstrates the highest completeness of individuals with ID of working age in Sweden. This makes it possible to follow the development of adolescents with ID over time. As one of the most extensive and comprehensive registers of individuals with ID in the world, it also forms a unique register internationally. © 2025 The Author(s). JCPP Advances published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.

Place, publisher, year, edition, pages
Chichester: Wiley-Blackwell Publishing Inc., 2026. Vol. 6, no 2, p. 1-15, article id e70028
Keywords [en]
cohort profile, intellectual disability, register, special school
National Category
Public Health, Global Health and Social Medicine
Identifiers
URN: urn:nbn:se:hh:diva-57383DOI: 10.1002/jcv2.70028ISI: 001542944900001PubMedID: 42291686Scopus ID: 2-s2.0-105012274476OAI: oai:DiVA.org:hh-57383DiVA, id: diva2:1999718
Part of project
The entering into adulthood – occupational patterns and individual prerequisites for young adults with intellectual disability in Sweden, Forte, Swedish Research Council for Health, Working Life and Welfare
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2018-01789Available from: 2025-09-22 Created: 2025-09-22 Last updated: 2026-07-08Bibliographically approved

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Jönsson, EvaStaland Nyman, CarinTideman, Magnus

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