Sickle Cell Disease Newborn Screening Program

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This announcement solicits applications for the Sickle Cell Disease Newborn Screening Program (SCDNBSP) to enhance CBO¿s efforts to provide follow-up services for sickle cell patients and support sickle cell disease counseling, education, referrals to a medical home, and other support services.  The goals of the SCDNBSP are for  a national sickle cell organization, in part by working with regional and local sickle cell community-based organizations (CBOs) to: 1) create a national effort to develop, implement, and maintain a national strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to assure access to comprehensive care; 2) increase the use of sickle cell educator/counselors (e.g., community health workers); and 3) increase the number of patients with care coordination, follow-up and referral to medical homes for sickle cell patients.  The sickle cell educator/counselors will provide care coordination to sickle cell patients in communities by educating patients about sickle cell, linking patients to medical homes and assisting them with other resources in the community to address their health care quality and outcomes.  A regional approach will be used for the Sickle Cell Disease Newborn Screening Program.  The Sickle Cell Disease Treatment Demonstration Program (SCDTDP) uses a regional model, and the applicant is expected to work collaboratively with the SCDTDP awardees.  The program will support one (1) applicant, that will be expected to have a national reach and to enter into subaward agreements with at least one sickle cell CBO in each region with the capacity to serve as a regional lead (See regions in the Background Section below).  The CBO regional leads will be expected to serve as a shared resource for other CBOs in the region and provide technical assistance to implement efforts to enhance outreach and education to the sickle cell community.  If a region does not have a sickle cell CBO with the capacity to lead the effort alone, multiple CBOs in the region may work collaboratively as the lead.  Also, if a region or subset of a region lacks a CBO that could perform the duties of the program, a medical center-based program that offers outreach and education may be used.  The applicant is expected to dedicate a significant proportion of the budget directly to the SCDNBSP regions to support the activities of this program. The successful applicant will: 1) serve as the lead organization for the national effort; 2) work with HRSA and CBOs to develop, implement, and maintain strategies to identify patients and assess their care quality and outcomes to assure access to comprehensive care, and 3) provide technical assistance for CBOs in developing strategies to increase the use of sickle cell educator/counselors.  The CBO regional leads will identify other CBOs and partners in each state of their region and, where applicable, work with the SCDTDP Regional Collaborative in their region to increase the number of patients receiving care coordination and referral to medical homes.

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