The Georgia Health Policy Center (GHPC) is excited to continue the work accomplished under CDC-RFA-DD14-1406 through this current funding opportunity. This proposal builds on our 10 years of experience as a data-coordinating center for multi-institutional projects focused on surveillance of and health promotion for individuals with blood disorders. We are excited to continue leveraging our nearly 15 years of data on individuals with thalassemia and sickle cell disease (SCD) in Georgia, and further strengthen our collaboration with CDC’s NCBDDD and other partners. While we are applying for both the thalassemia and SCD components, in year one almost all resources will focus on the thalassemia component because much of the sickle cell development work is well underway through our current award, separate funding under OT18-1802 the Sickle Cell Data Collection project (SCDC), and additional private funding. We have also asked our partners to focus their initial efforts on thalassemia activities leveraging any previous work they have done collectively and independently related to SCD.
GHPC and our collaborative partners propose a multi-faceted set of activities to improve the identification of individuals with undiagnosed thalassemia; to reduce complications of therapeutic transfusions in patients with thalassemia and SCD; and to understand the role of infectious agents in transfusion complications in thalassemia and SCD.
Our approach to identifying individuals with undiagnosed thalassemia builds on earlier and ongoing work in sickle cell disease surveillance that began under the Registry and Surveillance System for Hemoglobinopathies (RuSH) project and continues under SCDC. We plan to test algorithms in administrative claims data and validate results through clinical record review as well as improve follow-up for newborns with screening results suggestive of thalassemia and use this data to identify geographic locations with a higher number of cases and carriers to target communication and outreach strategies.
Our approach to reducing complications of transfusion in thalassemia and sickle cell disease includes the strategies around educating target groups (patients, families, and providers) on practice recommendations, educating these same groups on interpretation of test results for both conditions, and increasing blood donations from affected populations. We and our partners have already developed resources for each of these for SCD. We propose leveraging these previous efforts to adapt resources for similar groups of thalassemia stakeholders. These resources will include developing multiple products: infographics, videos, on-line course materials, briefs, news stories, postcards, factsheets, brochures, and journal articles for use through a variety of communication channels and then packaging them in toolkits that can be disseminated electronically and through CDC, partners, and other stakeholders.
Finally, to increase the understanding of the role of infectious agents in the blood supply, we plan to continue funding the biorepositories established under CDC-RFA-DD14-1406. Three hospitals plan to build on their established repository infrastructure including IRB approvals and lab and research protocols to increase collection of samples from transfused patients with thalassemia and continue to collect samples from patients with SCD.
Because two awards are anticipated under this RFA, we recognize that some strategies we propose may need to be modified in coordination with CDC and the co-awardee to avoid redundancy and leverage the unique and combined strengths of participants in this opportunity. We look forward to such collaboration.