Abstract
Fetal alcohol spectrum disorder (FASD) is the leading known cause of developmental disability in Canada and is a major public health and social issue. FASD affects approximately 4% of Canadians, yet we still do not have standardized data on individuals with prenatal alcohol exposure, including medical diagnoses, functional diagnoses, and treatment recommendations. This information will provide evidence related to prevalence, risk factors, interventions, and short- and long-term outcomes.
For the last 10 years, researchers have been working with FASD diagnostic centers to define meaningful data fields and to develop and implement a standardized database for online data collection. The National FASD Database currently has over 3500 records of information captured from individuals who have been assessed for FASD in 30 diagnostic clinics from across Canada. Not only does this Database provide an infrastructure to capture information about the physical, developmental, and mental health issues of individuals with prenatal alcohol exposure but also about their adverse experiences and recommended interventions, supports, and services. This database is the first of its kind, extending beyond the medical aspect of the FASD diagnosis and into capturing adverse experiences and outcomes of individuals with prenatal alcohol exposure, regardless of the diagnosis. Data confirms the complexity of the health, prenatal, and postnatal environments of individuals living with FASD across the life span.
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Cook, J.L., Unsworth, K.L., McFarlane, A. (2022). Development and Utility of a National Database of Individuals Exposed Prenatally to Alcohol. In: Chudley, A.E., Hicks, G.G. (eds) Fetal Alcohol Spectrum Disorder. Neuromethods, vol 188. Humana, New York, NY. https://doi.org/10.1007/978-1-0716-2613-9_9
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DOI: https://doi.org/10.1007/978-1-0716-2613-9_9
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