Collaborative research impacts design of care for women and girls with sickle cell disease

Advances in reproductive genetic technology have ushered in noninvasive prenatal testing (NIPT) for sickle cell disease (SCD), an inherited blood disorder passed down through genes predominant in Black populations. It reveals a fetus’ genetic status through the analysis of cell-free DNA present in the mother’s blood. According to Shameka Thomas, PhD, MA, early assessment of disease risk can help those in the Sickle Cell Women and Girls (SWAG) Research Laboratory bridge the knowledge gap between sickle cell disease and reproductive health issues for both patients and clinicians. 

To develop the nuances of the SWAG program, Dr. Thomas used data she collected as a former postdoctoral fellow at the National Institutes of Health National Human Genome Research Institute. The collaborative research involved: 

1. Including clinical partners and experts in Obstetrics and Gynecology specializing in high-risk pregnancies to assist with study design, provide clinical scenarios and research analysis.  
2. Circulating study-recruitment materials among their patients, uncovering existing barriers stopping Black women from participating in clinical research.  
3. Reviewing existing studies that showed that the majority of those completed on patient perspectives on the advancement of noninvasive prenatal testing for SCD did not include data from Black women with genetic conditions. And their exclusion exposed slanted research study samples. 
4. Developing SWAG by centering women and girls with SCD at the center of their research, ensuring their access to reproductive and maternal health resources and that patients receive the support they need alongside health care professionals.  
5. Prioritizing research as being the powerful tool to transform health care and influence health policy, clinical implementation and health care systems by developing sustainable, evidence-based, comprehensive care models.