Understanding the effects of uncertain health predictions after newborn screening.
Emerging Challenges in NBS: Benefits and Harms of Receiving Uncertain Prognoses After NBS
This study is looking at the difficulties parents face when their newborns are screened for inherited disorders and the results are unclear, aiming to understand how this uncertainty affects families and improve care for them.
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-10913540 on NIH RePORTER |
What this research studies
This research investigates the challenges faced by parents of newborns who undergo screening for inherited disorders, particularly when the results are uncertain. It aims to explore the benefits and harms associated with these uncertain prognoses, focusing on a new group of children known as 'patients in waiting.' The study will gather quantitative and longitudinal data to better understand the implications of these uncertain outcomes on children's health and the ethical and policy considerations surrounding newborn screening programs. By addressing these gaps, the research seeks to inform better care practices for affected families.
Who could benefit from this research
Good fit: Ideal candidates for this research include families with newborns who have undergone screening for inherited disorders and are facing uncertain prognoses.
Not a fit: Patients who have clear and definitive diagnoses from newborn screening may not receive additional benefits from this research.
Why it matters
Potential benefit: If successful, this research could provide clearer guidance on the implications of newborn screening, helping families make informed decisions about their children's health.
How similar studies have performed: While previous studies have laid the groundwork, this research aims to fill a significant gap in understanding the long-term effects of uncertain prognoses, making it a novel approach.
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.