New England Newborn Screening Program (NENSP)
Anne Marie Comeau, PhD
Project Leader
Analysis of newborn screening data provide insights into current and future needs of the population accessing specialized health services: specific types of health services, the projected costs of the health services, the accessibility of services – all of which are intertwined. In order to determine accessibility, we have asked some fundamental questions to address the location of the client in need of services relative to the location of the health services. Preliminary data for each of the five New England states served by the NENSP have been provided for MCH assessments and a summary will be presented at the September meeting of the NCC. These data analyses continue. The issues of “border babies” loom large in terms of tracking infants, shared responsibilities and interstate service availability. The initial needs assessment for interstate agreements came as a request to NENSP from the states’ newborn screening coordinators. A series of conference calls have been initiated to address interstate privacy and medical licensure challenges to provision of screening services. Finally as part of the Region I and Region II plans to optimize laboratory backup operations, NENSP met with representatives of the NYMAC (Region II) and laboratory directors from Region III and IV. A document was drafted entitled “Multilevel Backup Plans” which addresses short and long-term goals and timelines for regional and national laboratory backup.
- Epidemiologic analysis of newborn screening (cases and services) in New England
- Epidemiologic analysis relative to border babies
- Development of interstate agreements (if possible) relative to state privacy laws and HIPAA
- Development of interstate agreements (if possible) relative to state-specific medical licensure
- Development of intra and interregional plans and demonstration projects for newborn screening laboratory backup.
- Education, development and optimization of care protocols for CF newborn screening.