Participate in fetal alcohol spectrum disorder research

Are you the carer of a child with FASD?

We need your help!

Researchers at the Child Health Research Centre are doing a study to assess health and well-being of children with fetal alcohol spectrum disorder (FASD). We are looking to gather information from caregivers who have children with FASD (aged 5-18 years).

The need for more research

Much research to date has investigated the impacts of prenatal alcohol exposure on the developing brain, but there has been very little research about how prenatal alcohol exposure affects the body in other ways.

Case studies in children with FASD have identified a range of anomalies including heart and kidney defects. Recently, at the 17th International FASD conference it was suggested that rather than describing FASD as a brain-based disorder, it should be described as a “whole-body” disorder”. Outcomes from an informal survey conducted in young adults with FASD in Canada suggests they experience a range of diseases including early onset arthritis and hypertension (i.e. high blood pressure).

We are also interested in learning about the needs of caregivers and families.

How you can help 

You can help by attending one assessment session with your child. We have some health assessments for your child to complete (e.g. blood pressure, saliva collection, BodPod) and some caregiver questionnaires to complete (e.g. eating habits, sleep, behaviour). If you were interested you could also take a watch home to measure your child’s sleep and activity levels for the week.

With your help, our study hopes to fill in the gaps and learn more about how children have been impacted by prenatal alcohol exposure and the stressors that caregivers and families are facing. Ultimately, this will help to develop interventions to improve the health and well-being of individuals with FASD and their families.