Summary

History

The Autism Study began in 2003. Between 2005 and 2012, we used information from MoBa's questionnaire for 3-year-olds to identify children with signs of autism. The children were invited to participate in clinical assessments at the Nic Waals Institute, in order to confirm whether they had autism or not. Until 2018, we collaborated with Columbia University in New York, and the study was called the Autism Birth Cohort Study (ABC study).

Since 2009, we have linked MoBa with the Norwegian Patient Register to identify any MoBa participants who have been diagnosed with autism in the primary healthcare system. We check the medical records to examine whether the participants fit the diagnostic criteria for autism. In addition, we collect important clinical information.

Aim of the study

The autism study has the following scientific goals:

1. Identify and characterise autism cases in MoBa.
2. Identify prenatal and perinatal risk factors for autism, such as parental health and lifestyle, socioeconomic characteristics, maternal diet during pregnancy, maternal medication use during pregnancy, and any complications during pregnancy and childbirth.
3. Describe the natural course of autism, such as gender differences, development of autism symptoms, other psychiatric symptoms, growth, language development, motor development, cognitive functioning and comorbid medical and psychiatric conditions.
4. Describe healthcare use among children and young people with autism, such as the type and frequency of healthcare use, diagnoses, medication use, treatment and interventions.
5. Describe service use and social outcome among children and young people with autism, such as kindergarten use, schooling, type of school, school results, support, special housing, marital status and social security use.

The Autism Study currently uses the following data sets in research:

• Questionnaire data from MoBa.
• Data from the Medical Birth Registry for MoBa participants.
• Data from clinical trials of MoBa participants, conducted by the ABC study from 2005 to 2012, a total of 1032 participants.
• Data from the Norwegian Patient Register for MoBa participants who have received autism diagnoses in the specialist health service, a total of 1389 participants.
• Data from medical records for MoBa participants who have received autism diagnoses in the specialist health service. To date, journals have been reviewed for all who were registered in the years 2008-2014, a total of 567 participants.

The results of the clinical examinations and medical records reviews are described in Norwegian in an article in the Journal of the Norwegian Medical Association in 2019. 

New data collection

In 2020 and 2021, we will carry out a new round of journal reviews. We will now go through records for MoBa participants who were first registered with an autism diagnosis in the years 2015-2018. This applies to 779 participants.

Autism Study Protocol

See the full project description at Cristin for more information about results, researchers, contact information etc.

Project participants

Project leader

Pål Suren, Avdeling for barns helse og utvikling, Norwegian Institute of Public Health

Project participants

Fredrik Aaeng Kristiansen, Avdeling for forskningsadministrativ støtte, Norwegian Institute of Public Health
Martin Scheiene, Avdeling for barns helse og utvikling, Norwegian Institute of Public Health
Cathrine Friel, Norwegian Institute of Public Health
Hege Marie Bøvelstad, Avdeling for barns helse og utvikling, Norwegian Institute of Public Health
Alexandra Havdahl, Avdeling for psykiske lidelser, Norwegian Institute of Public Health
Siri Mjaaland, Avdeling for metodeutvikling og analyse, Norwegian Institute of Public Health
Anne-Siri Øyen, Norwegian Institute of Public Health
Christine Roth, Norwegian Institute of Public Health
Synnve Schjølberg, Avdeling for barns helse og utvikling, Norwegian Institute of Public Health
Anne Lise Brantsæter, Avdeling for miljø og helse, Norwegian Institute of Public Health
Per Magnus, Senter for fruktbarhet og helse, Norwegian Institute of Public Health
Camilla Stoltenberg, Instituttledelse, Norwegian Institute of Public Health