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Newborn screening faces uncertainty after federal advisory changes; DMD bill tabled on house calendar
Summary
Adrianne Manning, Connecticut newborn screening director at the Department of Public Health, told the Rare Disease Advisory Council that the disbanding of the federal secretary's advisory committee has left the RUSP nomination process unclear. Manning described reliance on a HRSA 'Propel' grant to add conditions (MPS II, Krabbe) and said CCMB lab
Adrianne Manning, director of newborn screening for the Connecticut Department of Public Health, told the Rare Disease Advisory Council that national changes to federal advisory structures have left the process for adding conditions to the Recommended Uniform Screening Panel (RUSP) uncertain and that state funding and federal grants will shape which disorders the state can add to its panel.
Manning said the secretary's advisory committee has been dissolved and that “it's not really clear, if it's gonna come from the secretary of health and human services” how RUSP additions will be advanced. She described multiple national groups — APHL, NASEM and professional societies — that have historically worked with the advisory committee and said those organizations remain active but…
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