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Updates from the NEGC at 2013 Annual Meeting

Save the date for the New England Genetics Collaborative (NEGC) Annual Meeting: April 10-11, 2014, to be held at the Hilton Garden Inn, Portsmouth, NH.

Work Group Updates:

  • Transition & Medical Home – Susan Waisbren, Boston Children’s Hospital
    • The group continues to work with school nurses regarding health care transition of at-risk youth
    • Face Forward summer conference for youth, hosted by Next Step, was held in July with 16 attendees. As always, it was a collaborative effort driven by an engaged youth leadership. One session facilitated by Susan lead to an important “lesson learned”: difficult conversations with parents (palliative care) need to be part of the transition plan.
    • Carl Cooley is no longer chairing the NEGC medical home group, though he will still be on the Collaborative Council.
  • Education and Outreach – Leah Burke, University of VT
    • Genetic Education Materials for School Success (GEMSS) now features 13 conditions plus an enhanced page for “undiagnosed”, and six more conditions are pending. The group has made significant progress on transition content for the website, which they plan to vet with both the NEGC and NCC transition work groups. Two NH LEND trainees have begun working with the group in September to help evaluate GEMSS.
  • Health Care Access and Financing – Meg Comeau, Catalyst Center
    • This group recently reviewed a draft policy brief introduced by Meg last April. It includes a concise problem statement, opportunities and challenges with the ACA, Medicaid expansion, overview of our family survey, policy recommendations and much more.
  • Quality Improvement – John Moeschler, NEGC Co-PI
    • The full QI work group, including the Genetics of Developmental Delay and the Metabolic Centers groups, met in Portland, ME, on September 20th. We are putting documents in place to create a legal framework for sharing data with the new clinical sites, and training clinicians on the registry form, which will be in electronic format soon.
  • NEGC/LEND – John Moeschler and Leah Burke
    • This work group is exploring best practices for incorporating genetics in their curriculums. One collaboration is moving forward: NH LEND’s Leadership in Action strand will assign two trainees to the Education & Outreach group to work primarily on evaluating GEMSS.

Special Projects:

Public Health Capacity: Critical Congenital Heart Disease (CCHD) – Monica McClain, UNH
This project’s annual meeting was held on September 6 to review newborn screening data (from > 15,000 newborns), and to discuss training issues and screening outside the well-baby nursery.

Website: The NEGC has added a page for the Affordable Care Act. It includes links to each New England state’s designated health care “marketplace”, and other resources. Updates will be posted as health reform unfolds.