Genetics Policy Hub

The National Coordinating Center for the Regional Genetics Networks (NCC) is pleased to develop and share resources related to genetics policy across the U.S. Within the hub, you can find the latest legislation and regulation at the state and federal level, latest information on Medicaid coverage policy, information about specific policy topics and related to policy statements from national organizations, and much more!

Link to resource:

SCDY Surveillance Update 2007-2016

This report is an updated version of the report Too Young to Die from 2012 which analyzed sudden cardiac death (SCD) occurrence, specifically among youth from 1-39 years of age. It includes updated death certificate data from 2007-2016, background information on SCD, mortality statistics, case reviews and potential prevention practices.