Issue:
The Canada Fetal Alcohol Spectrum Disorder Network (CanFASD) is Canada’s first comprehensive organization to support this country’s leadership in addressing the extraordinary complexities of Fetal Alcohol Spectrum Disorder (FASD). CanFASD is a national, charitable organization with a mission to produce multidisciplinary, collaborative evidence that can be shared with all Canadians, leading to prevention strategies and improved outcomes for people affected by FASD.
CanFASD’s primary focus is providing structure and support for research that sets the foundation for the development of effective, evidence-based programs and policies on FASD in Canada including federal, provincial and organization level strategic plans to address FASD, training resources and FASD-informed programs and services. By bringing together invested stakeholders- including member jurisdictions, researchers, parents and caregivers, clinicians, front line service providers, community advocates, program planners, government employees, political leaders, and people living with FASD, CanFASD is fostering the development of high impact initiatives around prevention, diagnosis and intervention for FASD as well as the knowledge exchange activities to support and promote them.
Background:
Fetal alcohol spectrum disorder is a major public health issue in Canada, affecting 4% of the population (1). This means over 1.4 million Canadians are living with FASD today. While other disabilities are also important, the prevalence of FASD is greater than autism, cerebral palsy and Down’s syndrome combined.
Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD is unique and has areas of both strengths and challenges.
The sole cause of FASD is alcohol exposure during pregnancy, thus FASD can affect individuals of all ages, genders, cultural and socioeconomic backgrounds. However, because of a complex combination of personal and environmental factors, some populations may be at a higher risk for FASD.
The indirect and direct costs of this disability to health care, education and social services sectors, as well as the criminal and justice system, is staggering — at about $4 billion a year. The cost to the quality of life for those living with FASD is unquantifiable.
Individuals with FASD often experience a complex array of issues including attachment, trauma and instability as well as compromised social determinants of health and stigma that compound their disability and lead to poor outcomes for this population.
Given the prevalence, incidence, complexity, inherent challenges and the limited funding and support for FASD, it is imperative that leaders collaborate and share evidence and resources to adequately and efficiently address this public health issue.
Definitions of collaborative research networks differ, but they commonly identify relationships, resources and knowledge transfer as key features of networks that “…involve the creation, combination, exchange, transformation, absorption, and exploitation of resources…within a wide range of formal and informal relationships” ((5), p. 21). Collaborative research networks have the potential to translate knowledge across the research, policy and practice divides – domains where collaboration is often constrained by different priorities and languages (6,7).
Click here for the full CanFASD issue paper.