Emerging Challenges in Newborn Screening: Understanding Uncertain Prognoses for Toddlers and Kids
Official title: Emerging Challenges in NBS: Benefits and Harms of Receiving Uncertain Prognoses After NBS
Funded at Children's Research Institute · NIH-11395428 · Data updated 2026-11-12
This research looks at how giving families uncertain predictions after newborn screening affects children and their families.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Research Institute NIH-funded |
| Lab location | 1 site (Washington, United States) |
| Project start | September 21, 2022 |
| Project end | August 31, 2027 |
| Funding year | 2026 |
| Award (this year) | $722,480 |
| NIH project number | 5R01HD106986-05 |
| Project ID | NIH-11395428 on NIH RePORTER |
Who could benefit from this research
✓Could help
Families and children who were identified by newborn screening and are experiencing uncertain or variable prognoses.
✕Less likely to help
Families not directly affected by newborn screening prognostic uncertainty may see limited personal benefit.
What this research studies
The project examines the real-world effects of uncertain health outlooks that arise after newborn screening. It aims to quantify the benefits and harms of having a prognosis that isn’t clear, using data from children identified through state screening programs. Researchers will analyze longitudinal patterns to understand how uncertainty influences care decisions, psychosocial outcomes, and policy implications for families and healthcare systems. The study builds on prior work by adding population-based, long-term data to better guide care for children labeled as “patients in waiting.”
Why it matters
Potential benefit: If successful, the work could inform guidelines to support families and clinicians in navigating uncertain prognoses after newborn screening.
How similar studies have gone: Previous research highlighted potential harms and benefits, but this project adds longitudinal, population-based data for clearer guidance.
Where this research is happening
-
Children's Research Institute
Washington, United States Active
Researchers
- Principal investigator: Tarini, Beth a — Children's Research Institute
- Study coordinator: Tarini, Beth a
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.