The prevalence of autism spectrum disorders (ASD) has increased approximately 10-fold over the past 20 years, now affecting about 60 pr 10 000 children. ASDs are highly heritable neurodevelopmental disorders, with environmental factors possibly functioni ng as triggers in genetically susceptible individuals. The burden is profound in human and economic terms.
We propose to establish the Autism Database (ADB) initially including all children born in Norway in 1999 or later who have received an ASD diagno sis in the health care system. We will invite the ADB children who are participants in the Norwegian Mother and Child Cohort Study (MoBa) to clinical assessment in the well-established Autism Birth Cohort (ABC). Thus, the ADB, the ABC and MoBa will mutual ly increase their scientific value and immediately yield results in neuropsychiatric research. In addition, we intend to develop the ADB into a long-term infrastructure for research on ASDs beyond the current scope of MoBa and ABC, adressing the need for studies on prevalence, comorbidity, quality of care, and causes of ASD.
MoBa is the worlds most comprehensive pregnancy cohort with health information and biological samples from about 110 000 mothers, 100 000 children and 70 000 fathers. The ABC is a case-cohort study nested within MoBa with the aim of identifying genetic and environmental causes of ASD. Recruitment to the ABC relies on screening and clinical assessment at three years of age, and complementary identification of cases through the healt h care system. The latter implies collecting data from Norwegian hospitals on children with ASD and getting access to data from the Norwegian Patient Registry.
The ADB takes advantage of and further promotes the national and international network already established by the ABC and MoBa studies. The ADB will require national collaborations and network building, and open unique possibilities for further international registry-based collaborations.