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Transformative SCD Centers

Consensus Recommendations for Integrated, High‑Quality Care

Individuals living with sickle cell disease (SCD) deserve more than episodic treatment — they deserve access to comprehensive care that anticipates needs, prevents complications, and supports thriving throughout life.

 

The Transformative SCD Center Framework created by the National Alliance of Sickle Cell Centers is a set of consensus‑based recommendations developed by clinical experts and community partners to guide the creation and operation of comprehensive care centers that deliver coordinated, equitable, and quality care for people with SCD.

Why Transformative SCD Centers Matter

Despite progress in clinical therapies, individuals with SCD continue to experience:

  • Fragmented care across specialties

  • Limited access to coordinated multi‑disciplinary providers

  • Inconsistent implementation of evidence‑based practices

  • Gaps in support for long‑term quality of life

 

Transformative SCD Centers address these gaps by:

  • Centralizing expertise and care coordination

  • Integrating medical, psychosocial, and community support

  • Advancing health equity and outcomes for historically underserved populations

Core Components of a Transformative SCD Center

Transformative SCD Centers are built on eight consensus domains. Each domain reflects best practices proven to improve health outcomes and patient experience.

1. Center Organization & Administration

2. Clinical Care

  • Leadership with dedicated SCD expertise

  • Defined governance structure

  • Clear mechanisms for quality improvement and accountability

  • Multi-disciplinary teams trained in SCD-specific needs

  • Evidence-based management of acute and chronic complications

  • Life-stage appropriate services (pediatrics through adult care)

3. Care Coordination & Navigation

4. Psychosocial Support

5. Community Engagement & Education

6. Research Integration

  • Patient navigators supporting care planning

  • Seamless referrals across specialties

  • Integrated transitions between pediatric and adult care

  • Behavioral health screening and services

  • Social work support for housing, transportation, finances

  • Family education and support resources

  • Peer support programs for patients and caregivers

  • Community outreach to build trust and awareness

  • Educational resources tailored to individuals with SCD

  • Structured involvement in clinical trials and registries

  • Data sharing to inform future care standards

  • Evaluation of outcomes and patient‑reported metrics

7. Health Equity & Access

  • Culturally responsive care environments

  • Strategies to reduce systemic barriers and disparities

  • Support for uninsured or under‑served populations

8. Data & Quality Improvement

  • Standardized measurement of outcomes and experience

  • Feedback loops for continuous improvement

  • Transparency in performance and impact

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