Data collection from the ABC Study
Most participants in the clinical assessments were recruited following a search of ASD symptoms reportedin theMoBa questionnaires that were completedaround the children's third birthday.
In November 2012, the clinical studies ended once all the MoBa participants had passed three years of age. Since 2005, over 1,000 children had been assessed at the clinic. Data collection continuesby collating MoBa and the Norwegian Patient Registry at regular intervals. Diagnoses are documented further by reviewing the clinical data from patient records.
Clinical assessments were conducted at the Nic Waals Institute in Oslo. The clinic was staffed with child psychiatrists, psychologists, research assistants, a family coordinator and a clinic coordinator.
Participants who were invited to the clinic were either 1) participants with symptoms of ASD reported in the MoBa questionnaire, 2) participants with suspected ASD based on the Norwegian Patient Registry, 3) participants who were randomly selected from MoBa (control group) and 4) MoBa participants who were referred by parents or by a healthcare professional with suspected ASD.
The assessment consisted of various instruments evaluating the development of the child, including interviews with parents, a medical examination and an evaluation by a child psychologist or child psychiatrist. The examination was compiled to provide a comprehensive picture of the psychological development, language and coping skills of the participating children.
The assessment contained the following instruments:
- ADI-R (Autism Diagnostic Interview - Revised)
- ADOS (Autism Diagnostic Observation Scale)
- Vineland Adaptive Behaviour Scales
- Mullen Scales of Early Learning
- Stanford-Binet 5th edition (for IQ testing) or WASI
- Medical examination
- Blood draw
- Final assessment and summary with a clinician
When the clinical assessments ended, the youngest MoBa children were only three years old. Many children with ASD are not diagnosed until school age, with some not being diagnosed until their teens.
The ABC study will therefore continue to collect data from MoBa participants who receive an ASD diagnosis to ensure that all cases in the cohort are included in our autism research. We achieve this by using the Norwegian Patient Registry, which is a mandatory registry that receives information on diagnoses from the specialist health care service in Norway.
In order to collect further information about the diagnostic assessments made in each case, information is collected from patient records. This is necessary to ensure that diagnoses are sufficiently documented so they can be used for research