Long Term Follow Up: Activities
The overall goal for the Long Term Follow Up work group is to establish a sustainable systematic and regional public health approach to Long Term Follow Up, based upon the success and infrastructure of the existing regional New Born Screening System and compatible with national endeavors.
Acomplishments Dr. Comeau presented on the importance of Long Term Follow Up (LTFU) of Newborn Screening conditions to state Newborn Screening advisory committees in Maine, Rhode Island, New Hampshire and Vermont. Approval for LTFU data collection has been established in Massachusetts and Maine. Recommended data variables have been identified. Multiple articles have been published on the designing and implications of LTFU systems. Current Work
The LTFU workgroup continues to support the development of the documentation for formal authority for LTFU data collection. This requires working with New England states on their respective regulations to enable the sharing of data between states. The work group will be testing the feasibility of the identified data collection approach; defining the quality assurance minimum data set, and convening a regional policy conference.
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