Improving consent processes for using newborn screening samples in diverse communities
Implementing a Novel Consent Process for Biospecimen Research after Newborn Screening in Hospitals Serving Diverse Patients
This study is all about making sure families from different backgrounds understand and feel comfortable giving permission for their newborn's blood samples to be used in important research, so that everyone is better represented in medical studies.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Utah NIH-funded |
| Lab location | 1 site (Salt Lake City, United States) |
| Project ID | NIH-10895564 on NIH RePORTER |
What this research studies
This research focuses on enhancing the consent process for using newborn screening blood samples in hospitals that serve diverse populations. It aims to ensure that families are adequately informed and can provide consent for the use of these samples in genomic research. By addressing the historical lack of diversity in biospecimen donors, the study seeks to improve the representation of underrepresented communities in precision medicine. The research will involve collaboration with healthcare providers and community stakeholders to assess and implement effective consent strategies.
Who could benefit from this research
Good fit: Ideal candidates for this research include families with newborns who are undergoing screening in hospitals serving diverse communities.
Not a fit: Patients who are not newborns or those who do not participate in newborn screening programs may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to more equitable representation in genomic studies, ultimately improving health outcomes for diverse populations.
How similar studies have performed: Other research has shown that improving consent processes can enhance participation rates and diversity in biobanking efforts, indicating a promising approach.
Where this research is happening
Salt Lake City, United States
- University of Utah — Salt Lake City, United States (Active)
Researchers
- Principal investigator: Rothwell, Erin — University of Utah
- Study coordinator: Rothwell, Erin
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.