Sickle Cell Disease Educational Repository

The Sickle Cell Disease Association of America, Inc. (SCDAA) has been awarded $2.9 million annually for the next four years from the Health Resources & Services Administration (HRSA) for the Sickle Cell Disease Newborn Screening Follow-up Program. With these funds, SCDAA will continue its efforts to establish the national infrastructure to ensure that individuals diagnosed with sickle cell disease (SCD) receive appropriate follow-up services including counseling, education materials and access to a medical home.

As a current grantee and the lead organization for HRSA’s Sickle Cell Disease Newborn Screening Program, SCDAA has served as the National Backbone Organization for HRSA, working with community-based organizations (CBOs) across the country to implement a strengthened approach to access quality care, quality care improvement and strategic activities within the sickle cell community.

This continuation funding provides the unique opportunity for SCDAA to enhance its activities by achieving the following key objectives:

  • Identify and support CBOs with the capacity to identify, educate and link patients to care in up to 17 states across the United States
  • Work with state CBO partners to provide care coordination, medical home assistance, education and other services to at least 15,000 non-active patients
  • Recruit, train and retain at least 150 Community Health Workers (CHWs) via a proprietary curriculum developed by SCDAA
  • Provide technical assistance to CBOs to conduct outreach to individuals with SCD
  • Develop partnerships with providers and share resources to promote individuals and families as partners in care
  • Develop, disseminate and ensure application of core competencies for CHWs in SCD
  • Establish and maintain a publicly available online repository of sickle cell-related evidence based materials, articles and other resources for use by children and adults with SCD, families and the SCD community
  • Develop partnerships with stakeholders from the public and private sectors to address emerging issues related to sickle cell disease and sickle cell trait

Over the past 2 years, as the lead organization for HRSA’s Sickle Cell Disease Newborn Screening Program, SCDAA has accomplished the following:

  • Enhanced the capacity of 25 member and non-member CBOs, covering 19 states by providing administrative and infrastructure support
  • Launched its National SCD Community Health Workers Training Program (based on a proprietary curriculum) and trained more than 85 CHWs that have reached more than 13,000 patients and assessed over 8,000 individuals in need of either a medical home or Hydroxyurea education
  • Developed and launched a Shared Management System to collect and analyze patient data for HRSA and to report data outcome measures