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The Canada Northwest FASD Research Network Initiating Implementation

The Canada Northwest FASD Research Network Initiating Implementation. Sterling K. Clarren, MD Professor of Pediatric, UBC CEO and Scientific Director, CanFAS May 11, 2006. The Goals of Phase I:. Initiate a scan of all FASD activity in Canada Northwest

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The Canada Northwest FASD Research Network Initiating Implementation

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  1. The Canada Northwest FASD Research NetworkInitiating Implementation Sterling K. Clarren, MD Professor of Pediatric, UBC CEO and Scientific Director, CanFAS May 11, 2006

  2. The Goals of Phase I: • Initiate a scan of all FASD activity in Canada Northwest • Organize this work into functional units for networking that would include: working with present data sets charting research directions into the future • Propose a structure for active networking to begin in Phase II

  3. Approximately 150 projects are currently active in Canada Northwest • Prevention • Surveillance • Diagnostics and Mechanisms • Treatments and Interventions

  4. Inventory Summary NU NT YK MB SK AB BC Total Research Demonstration Implement Database Prevention 7 19 15 1 42 Surveillance 9 10 1 20 Diagnosis 28 2 9 3 42 Treatment 7 18 23 48 52 41 55 4 152

  5. Forums were held to prioritize the work Winnipeg, September 17 DIAGNOSTICS: Making an FASD diagnosis: Networking parameters and population based research Calgary, September 24,25 PREVENTION: The networking of research in women’s issues as related to FASD prevention and best practice intervention. Yellowknife, October 22  INTERVENTION: Initiating a research network to promote the development of evidence based practice in supporting adolescents and adults with FASD.

  6. The leaders of the identified projects were all invited to the forums • There was representation from every province and most territories at each forum • There were university and non university affiliates at each forum • There was aboriginal representation at each forum • There were approximately 30 participants at each forum

  7. What we learned in Winnipegat the DIAGNOSTICS forum • There were 18 Programs in Canada NW that followed the Canadian guidelines and all had sent representatives to the meeting • The group endorsed the value of networking and saw the advantages to all of collaborating

  8. Under whose authority do these clinic operate? • Regional Health Authorities 10 • Not for Profit Societies 4 • Answer not given or unclear 3

  9. Manitoba (1) 200 Saskatchewan (5) 325 Alberta (6) 220 British Columbia (3) 300* Yukon (1) 10 Northwest Terr. (1) 25 Nunavut (0) FASD Diagnostic CapacityN = 1100 estimated assessments per year

  10. Coordinator 10 Physician 14 Geneticist 4 Psychiatrist 2 Psychologist 14 Social Worker 6 Nurse 3 “Com. Lias.” 5 SLP 9 OT 9 PT 3 RT 1 What professions are on the teams? (N=16)

  11. What are the ages of children evaluated in your program? • Birth to 2 years 8% • 3 to 5 years 32% • 6 to 12 years 36% • 13 to 19 years 21% • Adult 3%

  12. Does your clinic use the 4 digit diagnostic system?Yes 16 No 1Has the system been locally modified?Yes 4 No 13Are data forms completed?Yes 11 No 6How are the reports written?Structured/Semi -structured 14Is there a single summary report completed?Yes 13 No 4

  13. The clinics “potentially” service a significant component of the population and area of Canada Northwest but actual “service gaps”are not identifiedThe number of Aboriginal people who are served on or off reserve is not readily available.

  14. Data from the programs would be invaluable… • First prevalence figures for FASD in Canada • Identify areas of inadequate clinical capacity • Determine the unmet medical, mental health and educational needs of these patients • The population base could be used for clinical trials with new innovative approaches to intervention.

  15. There are significant challenges in collecting information • The data may not be available without a chart search that is costly (or at least takes motivation) • There are significant institutional concerns about where the data is going and who will be using it and for what purpose • There are legal and ethical hurdles that need to be passed before much of the data can be transferred • It may be impossible to capture some data retrospectively because permission was not obtained in advance

  16. What we learned in Calgaryat the PREVENTION forum • Prevention means many different things to different people concerned about FASD • Many believe that FASD should be approached for prevention directly • Others believe that it should be addressed within a larger context such as: poverty, abuse, women’s health or addictions

  17. Available data bases were rare, but • A large number of primary prevention materials were being used. None had been assessed for effectiveness or cost-effectiveness • Several provinces had adopted the Washington State Parent-Child Advocacy Program(P-CAP) but had not compared or contrasted the results • Their was interest in evaluating the effectiveness of FASD reduction within the context of other themes

  18. What we learned in Yellowknifeat the INTERVENTION forum • There were many projects on interventions with adolescence and adults with FASD in vocation, housing, education, criminal justice, sexualized behaviours, etc. • None were “research” projects with outcome based data. • I have rarely met a more passionate and compassionate group than those who came to this forum.

  19. The evolution of our recommendations • The Central Office developed key concepts and a general approach • We sought advice and ideas informally from PHSA leadership, Canadian colleagues who had worked in networks, individual board members, FNIHB, steering committee members, etc. • We sought advice formally in two meetings of the Board of CanFAS NW.

  20. Organization ofCanada NW FASD Research Network Canada Northwest Ministerial Partnership / Board of Directors / Central Office * / Research Cores *Administrative supervision and support through: The Provincial Health Services Authority of British Columbia

  21. Central Office Responsibilities • Leadership and direction • Coordination • Web site management and communication • Knowledge transfer

  22. Network Action Team #5 Network Action Team #3 Network Action Team #2 Network Action Team #1 Network Action Team #4 Network Implementation Team #1 Network Implementation Team #2 Network Implementation Team #3 First Nations, Métis, Inuit Population of Canada Northwest

  23. Research Action Teams • Comprised of “members” - researchers, research groups or communities • Work is facilitated by a “lead agency” that can sign contracts with the Central Office, manage the budget and apply for grants • Information that is collected is managed by the members and held in raw form by the Action Teams by the lead agency • The number of Action Teams will vary over time

  24. Network Integrating Teams • Provide information, guidance, direction needed by all the Action Teams • Structure and function of each Enabling Team will vary depending on its role

  25. Priorities for selecting the first Cores • There are a number of projects ongoing on comparable topics • There is interest among those groups in collaboration now and into the future • There is some information that could be networked together now • The information can inform policy decisions and improve prevention and intervention

  26. Proposed First Action Teams • 1. Research in Diagnostic Issues • 2. Intervention Research in individuals with FASD • 3. Prevention of FASD within the Context of Related Societal and Health Problems • 4. Evaluation of FASD specific public health warning and educational materials • 5. Evaluation of programs for FASD prevention in women identified as at high risk

  27. Proposed first “lenses”- all Action Teams will evaluate their data in these contexts • Cultural Diversity • Gender • Community • Geography • Priority for improved outcomes

  28. Proposed first Enabling Teams • 1. Knowledge Transfer • 2. Data Base Management • 3. Assuring Ethical and Legal Relationships with First Nations, Metis, and Inuit Communities (OCAP principals)

  29. Looking for our initial lead agencies • Organizations with an infrastructure in place for negotiating contracts, accepting funds, and managing budgets • Organizations interested in FASD with a track record of capability in research • Organizations with personnel in place who could provide the support needed for this project • Organizations that are distributed as widely as possible throughout Canada Northwest

  30. In Summary • This is not going to be easy • It is going to be really fascinating • We believe this approach has the potential to make a significant contribution to this field • Thank you, for your attention

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