NEW ENGLAND REGIONAL GENETICS AND NEWBORN SCREENING COLLABORATIVE
HRSA GRANT # 1U22MC03959
09/01/2004-05/31/2007
Thomas Brewster, MD
Project Director
The Goals of the New England Regional Genetics and Newborn Screening Collaborative are as follows:
Goal 1. To enhance collaborations among existing genetic and NBS entities and to more fully incorporate public health departments and Title V Programs, pediatric societies and families in regional endeavors.
Goal 2: To evaluate and improve current practice models for genetic services relevant to NBS disorders and to extend these models to non-NBS disorders.
Goal 3. To develop educational opportunities and evaluate/develop materials to increase genetic literacy among public health personnel, healthcare providers, affected families and the general public.
Background:
The New England Regional Genetics and Newborn Screening Collaborative has been developed to forge a common bond among genetics services in our region. This grant serves as a major impetus toward effecting comprehensive regional collaboration among the different genetic entities to improve diagnosis and treatment and to extend NBS and all genetic services to all families in the region who are underserved. This project has the potential to increase communication between providers, provide effective transitions to age-appropriate services, improve genetic literacy and implement programs that are not only cost-effective but that ensure access to genetic services. Currently, NERGG is collaborating with The New England Newborn Screening Program and Project Leader, Anne Marie Comeau, Phd and The New England Consortium of Metabolic Programs with Project Leader, Susan Waisbren, PhD.