Sickle Cell Disease Newborn Screening Program
This project supports the Sickle Cell Disease Association of America’s (SCDAA) work with community-based organizations to devise and implement a program that links people with sickle cell disease (SCD) and their families to knowledgeable service providers, quality medical homes, education and counseling support, community facilitators, and navigators for unmet needs. In addition, this national effort will help CBOs identify individuals with SCD and enroll them in Get Connected, the SCDAA-developed patient-centered national registry.
Who
Patients with SCD across the country
Our Role
Evaluate the effectiveness of community health workers as liaisons to families with a child with SCD. Provide assessments to the SCDAA based on interviews, program documents, self-assessments, quantitative analysis and key data sources to inform and guide further implementation.
Funder
This project is funded by the Health Resources and Services Administration (HRSA) in partnership with the SCDAA.
Project Impact
External Resources
State Perinatal Quality Collaboratives
List of PQCs funded by the Center for Disease Control and Prevention (CDC)
The Power of PQCs
Video showing the impact that PQCs have on the communities they serve. Produced by the NNPQC.
PQCs in the News
Articles in news outlets covering state PQCs, their activities, and the people that work in the collaboratives.
Patient Safety Bundles
From the Alliance for Innovation on Maternal Health. PSBs are collections of evidence-informed best practices that address clinically specific conditions in pregnant and postpartum people. The NNPQC helps provide TA and support to PQCs in adopting the core AIM Perinatal Mental Health Bundle.
Perinatal Quality Collaboratives
The CDC’s landing page for PQCs, including helpful infographics, videos, and links to help explain what PQCs are, how they work, and stories, learnings, and publications that have come out of the state PQCs.
Related Content
Resources produced by the Sickle Cell Disease Newborn Screening Program or on related topics
Meet Our Team
“In our deep organizational work to move along the Equity Systems Continuum from a Savior-Designed System to an Equity-Empowered System, we acknowledge the power of action. The potential is limitless for today’s commitments to improve the systems in which health care and public health professionals work and families receive care.”
