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Newborn screening is a highly successful public health program that saves thousands of lives and is crucial for both the rare disease community and the public.
Residual dried blood spots (DBS), leftover from newborn screening, play a vital role in program operations, public health research, and rare disease studies. However, policy changes must not compromise these lifesaving efforts.
With rising health misinformation and incomplete media coverage about DBS collection, it is essential for the newborn screening system to build trust through clear policies, transparency, and effective communication.
Between April and May 2024, the U.S.-based National Organization for Rare Disorders (NORD®) interviewed 13 patient advocacy organizations representing rare disease groups connected to the Recommended Uniform Screening Panel (RUSP). These interviews led to a working group discussion, involving NORD staff, the Board of Directors’ Advocacy Committee, and newborn screening experts. Together, they developed policy recommendations aimed at strengthening public confidence and ensuring continued participation in newborn screening.
This paper:
- Explores current challenges and concerns related to residual DBS use.
- Highlights the rare disease community’s priorities.
- Establishes guiding principles for evaluating DBS policies.
- Proposes solutions to address newborn screening program challenges.
Read the full paper here.