The National FASD Database

Data image

“This is the first time that Canada has had enough data to begin to really understand our FASD population – we have relied on data from other countries in the past.  Now we can see what the clinical profiles are for our own population affected by prenatal alcohol exposure, what their service needs are, and where and how we can put education, programs, and policies into place to meet the specific needs for Canadians.”

  • Jocelynn Cook, CanFASD Research Lead

CanFASD was recently in the news for its groundbreaking, comprehensive FASD database, the first of its kind in the world. Led by CanFASD Research Lead Dr. Jocelynn Cook, the National FASD Database provides key insights into the profile of Canadians assessed for FASD and highlights the demand for access to FASD clinical services across the country. Earlier this month, CanFASD announced the project in a news release, which was covered by many national news outlets.

The Database provides an integrated and coordinated approach to collecting information and characterizing the FASD population in Canada. Key information is collected on the challenges, strengths, and needs of Canadians who are assessed for FASD across the lifespan.

The Database has been active since the fall of 2016 and now has over 1,100 records from 25 participating clinics across 9 provinces and territories in Canada. Data is collected in a wide variety of areas, including:

  • Referral information
  • Demographics
  • Use of screening tools
  • Living situation
  • Family history of FASD
  • Other prenatal exposures, such as tobacco, cannabis, opioids, and cocaine
  • Sentinel facial features of FASD
  • Specific brain impairments
  • Individual strengths
  • Mental health history
  • Medications
  • Adverse outcomes
  • Formal FASD diagnosis
  • Other diagnoses and health issues
  • Support recommendations

Implications for Practice and Policy

The Database provides a wealth of information which has important implications for FASD policy and service delivery:

  • Gives us a better understanding of the specific difficulties, strengths, and outcomes across the lifespan that are experienced by people with prenatal alcohol exposure
  • Collects information about the demographics of people assessed for FASD, categories of FASD diagnosis, specifics of physical and neurobehavioural test results, and recommendations for interventions
  • Allows us to identify various trends and patterns related to FASD in Canada
  • Provides a structure for active communication and collaboration among all programs in Canada that provide FASD assessment and diagnostic services
  • Allows us to collect important information about individuals who are assessed for FASD but do not receive a diagnosis

“Collection of standardized data on children assessed for neurodevelopmental disorders across the country will provide evidence related to risk factors, interventions, and short and long-term outcomes. Comparisons in diagnoses made per capita and variations or similarity in treatment recommendations across jurisdictions will be highly useful in providing information to governments in developing improved policy and programming. This data will also provide important information to develop effective prevention messaging and interventions and supports for families.”

  • Kathy Unsworth, CanFASD Managing Director

The systematic and country-wide collection of FASD-related information allows us to understand the profile of Canadians with FASD, and better link interventions with areas of need. This information is also critical in helping us to identify gaps in practice and policy to better support individuals with FASD as well as the families and communities that support them.

The National FASD Database is supported by funding from Kids Brain Health Network and the Public Health Agency of Canada.

If your diagnostic clinic is not yet participating in the National FASD Database, we would love to have you join the project. Please contact Kathy Unsworth at kathy.unsworth@canfasd.ca for more information.

Stay tuned for more information as the Database continues to grow!

Leave a Reply