Using nurses to provide genetic counseling for sickle cell disease in primary care.

Integrating Nurse Champion Model for Group Reproductive Genetic Counseling forSickle Cell Hemoglobinopathies into Primary Care: A Pilot Implementation ScienceStudy

NIH-funded research University of South Florida · NIH-10666605

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 typeR21 grant
Study typeNIH-funded research
Funding institutionUniversity of South Florida NIH-funded
Lab location1 site (Tampa, United States)
Project IDNIH-10666605 on NIH RePORTER

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.

Who could benefit from this research

Good fit: Ideal candidates for this research include families in sub-Saharan Africa who are at risk of having children with sickle cell disease.

Not a fit: 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.

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 performed: 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

Tampa, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Conditions Hb SS diseaseHbSS diseaseHemoglobin S DiseaseHemoglobin sickle cell diseaseHemoglobin sickle cell disorder
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.