The development of consensus recommendation to improve practice harmonization for Sickle Cell Disease through the National Alliance of Sickle Cell Centers

Introduction SCD remains the most common inherited blood disorder. Due to a lack of strong evidence, the management of sickle cell is often anecdotal, local to individual centers, states, and countries. Even in areas of practice with high-level data to improve practice, implementation has not been consistent. The historical lack of an agreed-upon national registry has compounded this problem and resulted in a lack of comparative effectiveness data to identify areas of deficiency and improve practice. These barriers have resulted in centers developing local policies and procedures, often with limited communication with other centers, resulting in disparate and inconsistent care. Objectives To improve the situation, the National Alliance of Sickle Cell Centers (NASCC) was founded in 2020 and adopted a national registry, the Globin Research Network for Data and Discovery. To provide clear, practical, and measurable recommendations, the NASCC initiated a consensus procedure using a modified Delphi process to enhance the development of practice recommendations for SCD that include current guideline-based recommendations, use consensus where data are limited and identify areas where research is needed. Methods This manuscript explains the consensus process used, including the facilitation of the hybrid discussions and the categorization of practice-based recommendations as standard versus recommended. Results This paper describes the methods used to develop consensus recommendations to improve practice harmonization in SCD. Conclusions The recommendations resulting from this process will help us to provide consistent care to affected individuals, enhance the evidence base in SCD management and support quality improvement efforts.