Education and Outreach Genetics Education Materials for School Success (GEMSS) website (www.gemssforschools.org)www.gemssforschools.org –Added 12 conditions.

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Presentation transcript:

Education and Outreach Genetics Education Materials for School Success (GEMSS) website ( –Added 12 conditions (8 in queue) –Added Transitions section –Enhanced undiagnosed/other content –Expanded contact list from ~250 to 1,500

Medical Home/Care Coordination Participate in Genetics in Primary Care Institute Exploring expansion of the QI activity in New England

Transition Metabolic Basic for mitochondrial disease in progress Leadership training for youth/young adults Engaging public health nurses to reach out to school nurse community to provide transition resources

Quality Improvement Engage clinicians in QI activities –Global developmental delays/intellectual disabilties (data entry at 4 sites and 989 individuals in registry) –PKU/MCADD (data entry at 3 sites) Provide MOC for these QI activities

NEGC/LEND Four New England programs surveyed on incorporating genetics in curriculum Consensus statement completed for genetics objective Two trainees are working on GEMSS evaluation/dissemination

Health Care Access and Financing Develop Policy brief to inform families and policy makers (in press) –First survey of families completed –Second survey of families under development Added ACA page to the NEGC website, including NE marketplaces / navigators

A Regional Approach to Critical Congenital Heart Disease Newborn Screening Implementation Developed tier 2 educational brochure for parents/families Participated in national CCHD meeting in Feb 2014 Oz Systems developed and maintains central database Ongoing data collection

Site # Screened # Positive Positive Rate (per 10,000) # of CCHD cases Diagnosis Site A3, TAPVR Site B1, TAPVR Site C1, Site D2, Site E Site F6, Site G3, Total20, (3.3 – 15.0)2 Data from seven participating birthing facilities (through 1/31/14)

ACA Supplemental funding Model conditions cost elements identification and analysis –NEGC: Fragile X –Mountain States: PKU and sickle cell disease Ascertain cost elements across lifespan (includes services and reimbursement codes) Template will be used to review current coverage by plans/states