NYMAC
(New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services)
NYMAC Region
Workgroup 3 Activities
Objective: Develop a regional and interregional back-up system for newborn screening in case of emergency shutdown.
Activity 1: Develop a model central laboratory plan
Purpose: In case of a localized newborn screening laboratory shut-down, a central laboratory, perhaps hosted by the Centers for Disease Control and Prevention (CDC), would have adequate capacity for any state, technology and reagents similar to each state, a reporting system compatible with each state system, and be accessible to state newborn screening personnel for annual training or in case of emergency.
Develop a model central laboratory plan that includes all the components that must be included and considered.
Activity 2: Present this concept at appropriate national forums, including meetings and conferences of the National Coordinating Council, CDC and APHL.
Purpose: The details of emergency back-up plans must include so many different components of the screening programs that discussion among as wide an audience as possible will help to identify all the components to be included in the plans.
Ken Pass presented at the National Coordinating Council. The NCC has formed a nation-wide work group. Tom Hickey is working with the APHL, which also has a subcommittee.
Activity 3: Each state representative should develop a back-up plan for his or her state.
Purpose: For newborn screening emergency back-up plans to work they must include information from as many state programs as possible. This ensures the widest availability of back-up options that can be tailored to the specifics of the each emergency.
Most state representatives to the work group reported progress towards both raising the awareness of the need for a plan within their newborn screening program and beginning the process. Several state programs have developed lists, protocols and even drafted and signed memoranda of understanding with another state. NYMAC will follow each state's progress.
Activity 4: Develop a back-up plan model to be used by the states
Purpose: An emergency back-up plan must cover all components of newborn screening and address all issues. By drafting a model, each state can be sure that everything is included.
The Clinical and Laboratory Standards Institute (CLSI, formerly NCCLS) has published "Planning for Challenges to Clinical Laboratory Operations during a Disaster; A Report." That document has been used to create a model specific to newborn screening that has been shared with each state in the region.
For more information pertaining to this Work Group and its activities, please contact the Coordinator.