A major international panel has agreed updated standards for preventing and treating sickle cell disease (SCD), calling for consistent specialist care to reduce pain, prevent organ damage and improve survival. The recommendations form part of a modified Delphi consensus statement developed by experts from the National Alliance of Sickle Cell Centers (NASCC).
Extensive expert consensus
The statement was created by 41 paediatric and adult SCD specialists who undertook an in-depth review of the latest research. To account for changing needs throughout life, three separate expert panels were convened in 2022 focusing on age groups 0 to 2 years, 2 to 18 years, and over 18 years. The first two rounds of voting involved representatives from 41 NASCC recognised sickle cell centres.
A third and final vote in 2023 expanded representation to 81 centres across the United States, ensuring greater national input. The process prioritised three areas regarded as most vital to patient outcomes: preventative care including screening, management of acute complications, and access to proven treatment options. Researchers say the use of a large, multidisciplinary panel highlights a strong commitment to harmonising standards nationwide, reducing the postcode lottery often faced by people with SCD.
Preventing complications from birth
The guidance emphasises that care should begin soon after birth in a dedicated sickle cell centre and continue throughout life. Routine screening, regular health assessments and education for families are considered essential to detect organ complications early and reduce the frequency of pain crises.
Infection prevention remains a significant issue for infants and children with weakened immunity, and the panel agreed that proactive vaccination schedules and rapid response to fever can save lives. Management of painful episodes and other urgent complications should involve rapid access to specialists to avoid long term harm.
Expanding treatments and future research
The experts endorsed wider use of disease modifying therapies such as hydroxyurea, which can reduce crises and hospital admissions. They also called for ongoing research into the most effective timing for initiating treatment, personalising therapies to different disease presentations and evaluating transformative new options such as gene-based interventions.
Reference
Jacob SA et al. National alliance of sickle cell centers consensus recommendations on sickle cell disease health maintenance: a consensus statement. JAMA Netw Open. 2025;8;(11):e2543421.
