Topic: Sickle Cell Disease


Sickle Cell Disease Newborn Screening Program

Status: Active

WHAT: 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.

WHEN: March 2016 to June 2017

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.


Sickle cell disease (SCD) is an inherited red blood cell disorder that affects around 100,000 people in the United States, largely individuals of African ancestry, but increasingly in Latino and other populations as well. Individuals with SCD experience painful episodes when their red blood cells morph into a crescent (“sickle”) shape and get stuck in small blood vessels. This blockage inhibits blood flow, which deprives tissues of oxygen and causes severe pain and tissue damage. SCD is characterized by chronic anemia, unpredictable episodes of pain and end-organ damage, and early mortality.