Sickle Cell Data Collection Program Report: Data to Action – Priorities

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Based on feedback from an extensive number of stakeholders including national medical professional organizations, federal partner agencies, community-based organizations,  clinicians, state agency staff, and patients and their advocates, the SCDC program focuses on 5 priority areas.

These 5 areas were selected as priorities because they could be studied using SCDC data to help drive changes in policy or health care.

Geography of the patient population

SCDC data can be used to map the demography (size, structure, and distribution of a population) and geography (where people live) of people with SCD by county and subcounty.  Healthcare providers or facilities visited by patients can also be mapped to identify the geographic challenges in gaining access to care.

Transition from pediatric to adult care

During the transition from pediatric to adult care, people with SCD often experience more frequent complications related to the disease. SCDC data can help researchers understand why people with SCD often have the most severe symptoms and use healthcare services most frequently during this transition.

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1 in 10 people with SCD in the United States are Hispanic.

Hispanic patients with SCD

1 in 10 people with SCD in the United States are Hispanic.16 SCDC information can shed light on the challenges of identifying SCD among Hispanics, which includes Hispanics born outside of the United States.

Older patients with SCD

People with SCD are living longer, making it more important to use SCDC information to study common health problems—not just those related to SCD—that patients experience as they age.

The use of healthcare services

High use of healthcare services, including those in the hospital and emergency department, occurs among people with SCD. SCDC information can identify how often people with SCD use healthcare services and what factors may lead to periods of high use of these services.