1. TRANSITION WORKGROUP 2014-2015

2. GOALS FOR TODAY 1. Review activities from the past year 2. Key note address: An innovative approach to assessing health outcomes in transition stage of life 3. Integrate our clinical focus with a public health initiative How can we use assessments of our interventions to shape public health policies? Can we better align our activities with public health goals? Needs assessments to identify underserved populations or limitations to access Other aspects of public health goals?

3. Activities from our Region 1. Face Forward with Next Step (grant to continue Metabolic Campference) 2. Adult Support Group for Homocystinuria, MSUD and PKU 3. Moving on with Mito (www. Newenglandconsortium. Org)**6. 4. Collaboration with the Education Workgroup (GEMSS— Genetic Education Materials for School Success) (www.gemssforschools.org)www.gemssforschools.org 5. Adult Health Survey—now in REDCap ** 6. Collaboration with Bodimojo **

4. NCC NATIONAL TRANSITION WORKGROUP MEETING In conjunction with the ACMG Annual Meeting March 24, 2015 –Salt Lake City Attended by representatives from each of the Regional Collaboratives, ACMG, NICHD.

5. Regional Reports Region 7: Western States—Worked in collaboration with their LEND program, Department of Education and Vocational Training. Focus on access to geneticists and building a network of providers. “Mapping and Aspirations” tool. Regional 6: Mountain States –Focused on hemoglobinopathies and metabolic disorders. Focused on Access, systems and payment and patient compliance. Dissemination of guidelines to patients.

6. Region 5: Heartland-Transition engagement “checklist”, focus on “social capital” and developed simulated experiences for third year residents in family practice and internal medicine. Milestones for medical education and a telemedicine consult service (South Dakota) Region 4: Midwest-Care coordination Training (curriculum for families included a transition section). Had 200 participants in the webinar and received 28 completed follow-up questionnaires.

7. Region 3-SERC—Focus on Cost of Care, demonstrating that good transition saves the states money. Conducted large survey on transition programs for PKU and Sickle Cell. PKU programs failed miserably. Sickle Cell programs exist, but evaluation of their success is incomplete and tricky. Region 2-NYMAC—Webinar series, with meeting on transition (500 registrants, mostly parents). Also, survey medical residents, received 20 responses and only 2 had received any formal training on transition. Integrating activities with Medical Home and Genetic Counselors.

8. The Directive “Developing recommendations for framework for Regional Genetic Care Center Models for improving access to services” Will do away with the National Transition Workgroup and instead develop two workgroups: Public Health Direct Care Services (in general, no focus on transition) Want data, consolidation, and move to a policy level.

9. BodiMojo—an innovative approach to obtaining quantitative data regarding a “light touch” transition intervention. Welcome, Elizabeth (Liz) Donovan, a PhD psychologist who developed this app and has numerous on-going health projects.