Table 9 Most important information and research needs

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.