Key Findings
- Purpose
NASCC used a systematic, modified RAND/UCLA Delphi method to develop consensus-driven clinical practice recommendations for SCD. This process incorporated expert judgment alongside data from the Globin Research Network for Data and Discovery (GRNDaD) registry to harmonize practice across U.S.-based SCD specialty centers. - Population
NASCC member centers with recognized SCD specialty programs across the United States discuss and vote to develop consensus recommendations. - Headline Result
By January 2025, five major recommendation sets were finalized, addressing annual screening for infants (<2 years), children (2–18 years), and adults with SCD; documentation requirements for transition from pediatric to adult care; and criteria for identifying transformative therapy centers capable of allogeneic transplant and autologous gene therapy. Additional recommendations under final voting include treatment of uncomplicated pain crisis, optimal management and assessment for iron overload, the definition and training needed to be an SCD specialist, and the standards and recommendations for surveillance of neurocognitive functioning in SCD. - Why It Matters
Inconsistent practices and limited national registry data have historically challenged standardized SCD care delivery. Consensus recommendations aim to unify care delivery and improve patient outcomes. - Evidence Gaps
The current recommendations are predominantly consensus-based and may need randomized trial evidence.
Source: Journal of Sickle Cell Disease – Development of Consensus Recommendations to Improve Practice Harmonization for Sickle Cell Disease