Improving Completion Rates of Transcranial Doppler Ultrasounds in Children With Sickle Cell Disease Using Quality Improvement Efforts: In-Clinic versus Population-Based Assessments.

Transcranial Doppler (TCD) screening is essential for stroke prevention in children with sickle cell disease (SCD), but screening rates are low nationally. We use Medicaid administrative claims to assess TCD completion rates before and after a 12-month QI initiative to improve rates in the Pacific Sickle Cell Regional Collaborative (PSCRC). We found an increase in TCD screening rates for QI participant sites (52.

Genomics and Health Data Governance in Africa: Democratize the Use of Big Data and Popularize Public Engagement.

Effectively addressing ethical issues in precision medicine research in Africa requires a holistic social contract that integrates biomedical knowledge with local cultural values and Indigenous knowledge systems. Drawing on African epistemologies such as ubuntu and ujamaa and on our collective experiences in genomics and big data research for sickle cell disease, hearing impairment, and fragile X syndrome and the project Public Understanding of Big Data in Genomics Medicine in Africa, we envision a transformative shift in health research data governance in Africa that could help create a sense of shared responsibility between all stakeholders in genomics and data-driven health research in Africa. This shift includes proposing a social contract for genomics and data science in health research that is grounded in African communitarianism such as solidarity, shared decision-making, and reciprocity.

Depression, sleep and pain affect instrumental activities of daily living through cognitive functioning in adults with sickle cell disease: A report from the Sickle Cell Disease Implementation Consortium.

Depression, disrupted sleep and pain are common comorbidities in sickle cell disease. We tested (1) if these comorbidities are associated with attention/executive functioning, processing speed and instrumental activities of daily living (IADLs), which describe complex skills that support independence, and (2) if cognitive symptoms mediate the relationship between comorbidities and IADLs. Participants (n = 2417) completed patient-reported outcome measures through the Sickle Cell Disease Implementation Consortium.

Patient-reported pregnancy loss and maternal complications: Insights from the sickle cell disease implementation consortium.

Objective: Sickle cell disease (SCD) is associated with complications during pregnancy and can negatively influence maternal outcomes. Our study aimed to determine the prevalence and predictors of maternal morbidity among participants enrolled in an eight-site SCD Implementation Consortium (SCDIC) registry.

Methods: We conducted a cross-sectional analysis of female registry participants, aged 15-45 years, with a confirmed diagnosis of SCD.