Canadian Fetal Alcohol Spectrum Disorder Database Demonstrates International Leadership in FASD Research

A decade ago, Chief Scientific Officer of Kids Brain Health Network (KBHN) Dr. James Reynolds remembers considering how groundbreaking it would be to have a Canadian Fetal Alcohol Spectrum Disorder (FASD) database – one that could capture the many unanswered questions surrounding the disability.

Dr. Sterling Clarren—former Scientific Director of the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD)— initially came up with the idea and consulted with Dr. Reynolds and fellow researcher Dr. Jocelynn Cook.

By 2010 Dr.’s Clarren and Cook had managed to secure some funding to start the project. In 2015 Kids Brain Health Network began funding the project as part of a larger FASD research program, and the database took off. Today, the National FASD Database has over 2,000 entries from 28 FASD diagnostic clinics spanning seven provinces and territories.

The project is now being led by Dr. Cook and CanFASD, and continues to be supported by KBHN and funded by the Public Health Agency of Canada and CanFASD. It’s the only comprehensive FASD database in the world and has received international attention, with other countries including Australia and New Zealand looking to Canada as they work towards creating a similar database of their own.

“The idea was to have a national database that would actually allow us to describe FASD in a quantitative way that nobody could argue with,” explains Dr. Reynolds “People would say, ‘well, we don’t really know what challenges these kids have, and we don’t really know what their comorbidities are.’ Well, now we know, with evidence from a very substantial sampling.”

FASD is a brain-based disability as a result of prenatal exposure to alcohol and is estimated to affect at least three per cent of the Canadian population. The process of receiving a diagnosis requires an assessment from a multidisciplinary team, who follow Canada’s current diagnostic guidelines for FASD which requires assessing 10 different brain domains—including those responsible for memory, hyperactivity, and motor skills. In order to receive a diagnosis, three domains must be deemed significantly impaired. (Read more…)