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Table 9 Most important information and research needs

From: Integrating care for individuals with FASD: results from a multi-stakeholder symposium

Primary Care
• Is there an association between cultural continuity (Chandler and Lalonde) and rates of FASD?
• If communities re-establish cultural practices/knowledge, do the rates of FASD change?
• Effective Therapies: a) What non-medical therapies are effective for FASD? (e.g., neurorehab, exercise, meditation). b) How to take advantage of neuroplasticity? c) RCTs to evaluate medical treatment for behaviour.
Parents & Advocates
• Knowledge Translation: Best practices to bring research knowledge to service provision and families.
• Root Causes, Impacts and Prevention: Poverty, racism, colonialism, marginalization, demoralization, stigmatization.
• Why Manitoba has so many children in foster care?
Allied & Mental Health
• Identification of early factors that are indicative of later functioning.
• What is the knowledge base of various community professionals that we interact with and what are the gaps in knowledge?
• What are the outcomes of a diagnostic assessment? What are the impacts over time?
Education
• Low enrollment versus integration/streaming and the impact of secondary disabilities.
• Best Practices: In early years, middle years and high school
• Best Practices: For keeping students in school, graduating, and leading a productive life.
Government & Policy
• What are the protective factors for individuals with FASD that influence stability? (e.g., environmental, lack of trauma, degree of brain injury, resiliency,..)
• Would integrated care for women with FASD assist with FASD prevention?
• What are the most effective intervention strategies for youths and adults?
FASD Regional Coordinators (Diagnostic Network)
• Longitudinal Study: What is the quality of life of adults who received or had a DX of FASD made while they were in the care of child welfare?
• How many children diagnosed with FASD have a diagnosis of attachment disorder? (Or have risk factors for attachment disorder?)
• Best Practices: For providing optimal care/treatment for adolescents with mental health needs/services involvement.
Social Services
• Research on the impact of a diagnosis on families and communities (e.g., readiness, challenges & benefits).
• Functional Evaluation Research: E.g., compare & contrast the functioning of individuals with IQs under 70 with individuals diagnoses with FASD.
• Are there alternative tools to measure adaptive/functional skills for individual with FASD
Criminal Justice
• Greater specificity about the impact of FASD on a particular behaviour of individuals.
• Who are the ‘experts’ for potential Court testimony?
• Statistics relating to the prevalence of FASD in the criminal justice system.