A common informatics infrastructure is feasible to standardize processes and data comparisons for sickle cell disease across states, according to a study recently published by Sickle Cell Data Collection Program researchers in JAMIA Open. Further, the researchers say, this infrastructure may enable public health surveillance collection for other rare diseases.
The Sickle Cell Data Collection Program (SCDC) is funded by the Centers for Disease Control and Prevention (CDC) and is currently active in 11 states. The challenge is that necessary surveillance data — state newborn screening results, Medicaid databases, all-payer claims, hospital discharge data, death records, and electronic medical records — is maintained in many state-specific systems and varying formats.
While common data models exist for cancer care and vaccine and drug safety, none previously existed for a rare disease.
The Core Surveillance Data Instrument of the Common Data Model for sickle cell disease was piloted in Tennessee, North Carolina, and Michigan. The SCDC researchers determined the core data was feasible for most states to collect and measure with reasonable accuracy. Further, the core data elements have high public health and policy relevance and are reported annually by states and compiled by CDC.
“Not only does this common data model strengthen our network’s ability to analyze data across state sickle cell disease populations, but it also provides a blueprint for expanding sickle cell data collection or establishing similar public health surveillance efforts for other rare diseases,” says GHPC senior research associate and coauthor Brandon Attell
Read the full study here.