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.


Status: Complete

March 2016 to June 2017

  • Who:  Patients with SCD across the country.
  • Funder: This project is funded by the Health Resources and Services Administration (HRSA) in partnership with the SCDAA.
  • 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.