Long Term Follow Up
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The long term health of children identified through Newborn Screening has not been tracked or evaluated in a comprehensive, analytical manner. Additionally, outcomes for those children identified through Newborn Screening have not been effectively linked to a particular approach in care. A sustainable system is needed to track these cases in order to ensure improvements and optimized care for these conditions.
To accomplish the above requires efforts by the work group on a number of fronts, including defining and collecting the appropriate data to track the identified conditions, as well as engaging the appropriate decision-makers to establish agreements for data sharing among the New England states. Why It Is Important The collection and analysis of information on the care and outcomes of children identified by Newborn Screening is a way to identify successful care treatments, thereby improving the health and well-being of those with genetic conditions.
Definition LTFU endeavors to establish a sustainable system to track the care throughout the lifespan of individuals identified with a condition included in newborn screening, with the mission of ensuring continued quality care.
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