World-Renowned FASD Database

Project Description

Challenge

There are still a lot of unknowns when it comes to FASD. First, the disorder presents in many different ways. It also remains unclear exactly how alcohol is impacting the brain and what factors contribute to its impact.

Project Summary

The Canada FASD Research Network National Dataform Project—a comprehensive database of individuals living with FASD across Canada—is helping researchers gain a better understanding of FASD. The project started in 2015 and is a collaboration between KBHN and CanFASD and is the first database of its kind in the world to collect and analyze data on the functional diagnosis and treatment recommendations for individuals with FASD.

The Dataform Project currently contains over 2,000 entries from more than 28 diagnostic clinics spanning seven provinces and territories. After a diagnostic assessment, participating clinics fill out a data form which collects extensive information, including whether or not the individual received an FASD diagnosis, their history of prenatal alcohol exposure, and any other diagnoses.

Result

The team is analyzing the data and are beginning to notice trends. Other countries, including Australia and New Zealand, have also started to express interest in developing a similar database of their own. The overall aim of the project is to get a better picture of the FASD population in Canada to identify distinct needs, ensure best practices when it comes to diagnostic assessments, and inform future research.

As the project expands, another goal is to compare data to children with other brain-based disabilities such as autism and cerebral palsy. Traditionally, children obtain access to services based on a diagnosis. Being able to demonstrate that individuals with different brain-based disabilities face similar challenges and would benefit from the same types of interventions could make services more accessible.

In the future, the team plans to get more clinics to participate and find ways to recruit people with FASD who might be harder to reach—mainly those who aren’t necessarily well supported enough to access a diagnostic clinic.

Funding

This subproject was part of the larger “FASD: Early Life Adversity, Outcomes and Secondary Intervention and Prevention.” The FASD program was funded a total of $1,205,381 from the Kids Brain Health Network and $2,148,667 from participating partners.