Project Description

Challenge

While researchers know that FASD is a result of prenatal exposure to alcohol, the disorder presents in many different ways.  It is important to better understand the presentation of FASD in Canada, patterns and the extent of neurobehavioural impacts, and recommended interventions and supports in order to mitigate adverse issues and maximize developmental trajectories for individuals and famililes affected by prenatal alcohol exposure.

Project Summary

To increase our understanding of FASD, KBHN and CanFASD have collaborated to create The Canada FASD Research Network National Dataform Project – a comprehensive database of individuals who have been assessed for FASD  across Canada. This is the only National FASD database in the world, and it collects and analyzes data on the functional diagnoses, mental and physical health co-morbidities, and treatment recommendations for individuals who have been assessed for FASD.

Participating clinics enter patient-level data into a secure, online database.  Data fields include, age, living situation, reasons for referral and source of referral, as well as whether or not each criterion of the diagnostic system is met.   This data allows researchers to analyze different diagnoses made within the FASD spectrum, the frequency of different presentations and common patterns of expression of the FASD phenotype.

By September 2018, the database contained over 1,139 usable records from 29 participating clinics across Canada.

Result

Several studies based on this data are currently underway, focusing on topics such as mental health, homelessness, justice offenders, and adults and adolescents. As the team continues to expand the database, they will provide on-going support to the clinics entering data, including an online video tutorial to walk clinics through the data entry process and explain how the DataForm works. They are also working to expand the nuber of participating clinics.

As the database continues to evolve, the data become even more powerful in providing real-time information on the difficulties, challenges, and needs of those who present for an FASD diagnosis, as well as allowing KBHN to investigate research questions that will have an impact on individuals and families.

Funding

Kids Brain Health Network – $66,000
Partners – $520,570

Team

Jocelynn Cook