What uncertain newborn screening results mean for infants and families
Emerging Challenges in NBS: Benefits and Harms of Receiving Uncertain Prognoses After NBS
This project looks at how unclear newborn screening results affect infants and their families over time.
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 ID | NIH-11177059 on NIH RePORTER |
What this research studies
If your baby gets an unclear result on newborn screening, this project will follow families like yours to see what happens next. The team will link state screening records, medical charts, and family surveys to track health, development, and family experiences over months and years. They will generate population-level, longitudinal data on children labeled as “patients in waiting” and compare their outcomes to children with clear diagnoses. The goal is to clarify the benefits and harms of uncertain prognoses so care and policy can better support families.
Who could benefit from this research
Good fit: Ideal participants are newborns and young children flagged by routine newborn screening with uncertain or variable prognoses, and their parents or caregivers.
Not a fit: Families whose children had clear diagnostic results, adults, or those living outside participating screening programs are unlikely to directly benefit from taking part.
Why it matters
Potential benefit: If successful, the research could help clinicians and policymakers reduce harm from uncertain results and improve counseling and follow-up for affected families.
How similar studies have performed: Previous studies offered small-scale or qualitative insights into these issues, but large, quantitative, longitudinal population-based data of this kind are new.
Where this research is happening
Washington, United States
- Children's Research Institute — Washington, United States (Active)
Researchers
- Principal investigator: Tarini, Beth a — Children's Research Institute
- Study coordinator: Tarini, Beth a
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 below.