Using nurses to provide genetic counseling for sickle cell disease in primary care.
Official title: Integrating Nurse Champion Model for Group Reproductive Genetic Counseling forSickle Cell Hemoglobinopathies into Primary Care: A Pilot Implementation ScienceStudy
Funded at University of South Florida · NIH-10666605 · Data updated 2026-11-12
This study is looking at how training nurses to provide genetic counseling and carrier screening for sickle cell disease can help families in Sierra Leone make informed choices about having children, especially since there aren't many genetic counselors available in the area.
Quick facts
| Grant type | R21 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of South Florida NIH-funded |
| Lab location | 1 site (Tampa, United States) |
| Project start | March 15, 2022 |
| Project end | June 30, 2025 |
| Funding year | 2023 |
| Award (this year) | $155,751 |
| NIH project number | 5R21HG011929-04 |
| Project ID | NIH-10666605 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include families in sub-Saharan Africa who are at risk of having children with sickle cell disease.
✕Less likely to help
Patients who do not reside in sub-Saharan Africa or those who are not at risk of sickle cell disease may not benefit from this research.
What this research studies
This research aims to improve genetic counseling and carrier screening for sickle cell disease (SCD) in sub-Saharan Africa by training nurses to take on this role. Given the limited availability of professional genetic counselors in the region, the study will assess how well a Nurse Champion model can be integrated into primary care settings. The project will evaluate patient uptake of these services, satisfaction levels, and the overall effectiveness of the model in local hospitals in Sierra Leone. By focusing on the acceptability and feasibility of this approach, the research seeks to enhance reproductive decision-making for families at risk of having children with SCD.
Why it matters
Potential benefit: If successful, this research could significantly reduce the incidence of sickle cell disease in children by improving access to genetic counseling and informed reproductive choices.
How similar studies have gone: Other research has shown that training non-specialist health workers, like nurses, can effectively improve access to genetic counseling in underserved areas, indicating a promising approach.
Where this research is happening
-
University of South Florida
Tampa, United States Active
Researchers
- Principal investigator: Jaja, Cheedy — University of South Florida
- Study coordinator: Jaja, Cheedy
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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.