Here is the guidance, and John's initial ideas when he read it.

Purpose of the call: Collaborative council will provide feedback on proposed activites.

PROPOSALS: 

  1. Healthcare Transition for Youth with Metabolic and Other Genetic Disorders (Aims 1 and 2) 
    • Priority #1b (transition)
    • Susan
  2. Medical Home - 3 proposals;
    • priority #1 (medical home)
    • Carl 
  3. Long Term Follow Up of Infants Diagnosed with Newborn Screening Conditions in New England (Part 3); rough budget based on expenditures
    • priority #8
    • Anne
  4. Emergency Preparedness
    • priority #9
    • Roger
  5. CCHD component
    • priority #4 (build capacity in PH)
    • Monica 
  6. NEGC ACA Education and Advocacy Support Proposal
    • Priority #6b (partner with HRSA programs like Catalyst Center) and #7 (insurance/reimbursement)
    • Meg Comeau, Kay Johnson, Michelle Winchester, negc Advocacy Committee, Jason Smith/Audrey Chapman (UConn) 
  7. Expand the Pool of Genetic Service Workforce by Reaching Out to School Nurses to Determine Their Needs and Gaps and Develop and Provide Education and Training
    • Priority #3 (expand workforce, includes school health centers)
    • Carol Orton and Dale Lea
  8. Developement and Pilot testing of a Web-toolbox to encourage public health-medicine integration approaches to increasing the use of Family History to Improve Population Health
    • priority # 1a (integrate family history tool)
    • Holly Tutko
  9. Joanna Fanos' potential areas of inquiry, budget: 
    • Needs assessment of parents receiving a positive screen for their child
    • Inclusion of siblings of children identified via newborn screen in family studies
    • Newborns identified as carriers of a gene mutation but not affected (e.g. hemogloginopathies)
    • Transitioning from the pediatric to the adult provider
    • Attitudes of providers and parents of disclosure of results from chromosomal microarray testing and whole genome sequencing
  10. NBSTRN database (Monica indicated she would like to do activities)
    • priority #8d (LTFU / partner with NBSTRN)
  11. Patient Navigaion in Sickle Cell Disease ; budget: 30K per year 
    • Goal 1 (access, including lifecourse; underserved populations), and priority #8 (LTFU)
    • Patricia Kavanagh, Barry Zuckerman  
  12. Inter-region Initiative - Transition 
    • priority #1b (transition)
    • NEGC/NYMAC/Southeast region
  13. Educational Outreach Work Group
    1. Leah
  14. John
    1. QI activites (ok to share but not complete)
    2. LEND activities
    3. also thinking about workforce development; and education.
  15. Long Distance Metabolic Clinical Support
    • Priority #
    • Mark Korson