The Development of Consensus Recommendation to Improve Practice Harmonization for Sickle Cell Disease through the National Alliance of Sickle Cell Centers

Abstract:

Introduction

Sickle cell disease 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 a disparate and inconsistent care.

Objectives

To improve the situation, the National Alliance of Sickle Cell Centers 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 National Alliance of Sickle Cell Centers initiated a consensus procedure using a modified Delphi process to enhance the development of practice recommendations for sickle cell disease that include current guideline-based recommendations, use consensus where data is 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 vs recommended.

Results

This paper describes the methods used to develop consensus recommendations to improve practice harmonization in sickle cell disease.

Conclusions

The recommendations resulting from this process will help us to provide consistent care to affected individuals, enhance the evidence-base in sickle cell disease management and support quality improvement efforts.

Lay Summary

Sickle cell disease (SCD) is a common inherited blood disorder both in the United States and globally. Managing this condition has often relied on local practices rather than strong evidence-based guidelines, leading to inconsistencies in care across different centers and regions. To address these (and other) issues, the National Alliance of Sickle Cell Centers (NASCC) was established in 2020. One of its key initiatives is the use of a national registry called the Globin Research Network for Data and Discovery (GRNDaD) to collect detailed data that can identify gaps in care and facilitate improvements in SCD management.

NASCC has also implemented a way to develop more recommendations for care using a consensus process, called a modified Delphi method. By harmonizing care practices across NASCC SCD centers and promoting the use of the GRNDaD registry, NASCC aims to enhance the quality and consistency of care for individuals with SCD. This collaborative approach is expected to bolster the evidence base for SCD management and support ongoing quality improvement efforts in the field.

Sickle Cell Disease, Sickle Cell Centers, Delphi, Recommendations, Quality Improvement

Accepted manuscripts

Accepted manuscripts are PDF versions of the author’s final manuscript, as accepted for publication by the journal but prior to copyediting or typesetting. They can be cited using the author(s), article title, journal title, year of online publication, and DOI. They will be replaced by the final typeset articles, which may therefore contain changes. The DOI will remain the same throughout.