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

Data sources

Health scientists in participating states work with organizations to access

• Newborn screening records
• Death certificates
• State Medicaid claims
• Hospital and ED discharge data.
• Clinical data from SCD clinics

Once health scientists have access to these data, they link the datasets and de-duplicate patients appearing in multiple datasets; then they create a case file for each individual in the data system.

At this time, SCDC data do not include government data other than those from health agencies (no school records or immigration status), data directly from people with SCD (no surveys or biological information), or private sector data (no employment records).

Data storage

Health scientists in their respective states maintain all individual level, identifiable data.

At this time, health scientists in their respective states maintain all individual level, identifiable data. Data-use agreements within each state and across state agencies require that these data are treated as any state-level protected health information (such as information about infectious disease or cancer registry data). This means

• Strict requirements regarding hardware, networks, and procedures for data storage and access
• Training and certification for personnel working with the data
• Commitment to data security and patient privacy at all levels of these state projects.

Identifiable data are not shared with other entities (including external researchers and federal agencies, such as CDC), but SCDC health scientists may work with external researchers to analyze these data as long as the data are only directly accessed by SCDC health scientists and results are reported in summary form.