Back to search

HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester

PrecisionCare: Improving pathways to care for children and adolescents with autism spectrum disorder

Alternative title: PresisjonsTilbud: Forbedre tjenestetilbudet til barn og unge med autismespekterforstyrrelser

Awarded: NOK 12.1 mill.

Autism spectrum disorders (ASD) patients are defined by problems with social communication and by having restricted and repetitive behaviors. About one in hundred have ASD. Minority groups are overrepresented and often difficult to map due to cultural and language barriers. Somatic and psychiatric comorbidities are frequent. Symptoms typically arise early and persist throughout life often contributing to reduced quality of life. The severity and large variation of ASD highlight the need for specialized, coordinated health care services, but parents report lack of coordinated interventions across school and health services. Likewise, genetically-based diagnosis, rehabilitation and services vary highly across municipalities and dependent on clinicians involved, possibly reflecting the lack of standardized, individualized treatment. The aim of the inter-disciplinary PrecisionCare is to improve diagnostics and pathways to care across health care and education for children and adolescents with ASD by identifying cross-sectorial bottlenecks in healthcare and improving diagnostics to enable better outcome. We will map individuals characteristics with optimal pathways to health care and understand more of causes and mechanisms of ASD development through genetics, brain and clinical traits of large clinical existing (n=1470) and new (n=400) samples of ASD (BUPGEN) and the unique Norwegian Mother and Child Study (MoBa, n=114k) using web-based questionnaires and registries and including user perspectives from persons with ASD, clinicians and caretakers. This may identify clinically relevant patterns for selection of interventions, and establish a tool for public health policy and a platform for pilot testing of health care interventions in young ASD patients building precision medicine opportunities for the future across health care-sectors.

Autism spectrum disorders (ASD) patients display deficits in social communication and restricted and repetitive behavior. ~1% of Norwegians including >10 000 children and adolescents have ASD. Minority groups are overrepresented and often difficult to map due to cultural and language barriers. Somatic and psychiatric comorbidities are the rule, not the exception. Symptoms typically arise early and persist throughout life often contributing to greatly reduced quality of life. The severity and heterogeneity of the highly heritable ASD highlight the need for specialized, coordinated health care services but parents report lack of coordinated interventions across sectors. Likewise, genetically-based diagnosis, rehabilitation and services vary highly across municipalities and dependent on clinicians involved, possibly reflecting the lack of standardized, individualized treatment. The aim of the inter-disciplinary PrecisionCare is to improve diagnostics and pathways to care across health care and education for children and adolescents with ASD by identifying cross-sectorial bottlenecks in healthcare and improving diagnostics to enable better outcome. We will map individuals characteristics with optimal pathways to health care and understand more of causes and mechanisms of ASD development through genetics, brain and phenotypes of large clinical existing (n=1470) and new (n=400) samples of ASD (BUPGEN) and the unique Norwegian Mother and Child Study (MoBa, n=114k) using web-based questionnaires and registries and including user perspectives from both clinicians and caretakers. This will identify clinically relevant patterns for stratification and prediction, and establish a tool for public health policy and a platform for pilot testing of health care interventions in young ASD patients building precision medicine opportunities for the future across health care-sectors.

Funding scheme:

HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester