Common data model for sickle cell disease surveillance: considerations and implications.

Smeltzer, Matthew P; Reeves, Sarah L; Cooper, William O; Attell, Brandon K; Strouse, John J; Takemoto, Clifford M; Kanter, Julie; Latta, Krista; Plaxco, Allison P; Davis, Robert L; Hatch, Daniel; Reyes, Camila; Dombkowski, Kevin; Snyder, Angela; Paulukonis, Susan; Singh, Ashima; Kayle, Mariam

Common data model for sickle cell disease surveillance: considerations and implications.

dc.contributor.author	Smeltzer, Matthew P
dc.contributor.author	Reeves, Sarah L
dc.contributor.author	Cooper, William O
dc.contributor.author	Attell, Brandon K
dc.contributor.author	Strouse, John J
dc.contributor.author	Takemoto, Clifford M
dc.contributor.author	Kanter, Julie
dc.contributor.author	Latta, Krista
dc.contributor.author	Plaxco, Allison P
dc.contributor.author	Davis, Robert L
dc.contributor.author	Hatch, Daniel
dc.contributor.author	Reyes, Camila
dc.contributor.author	Dombkowski, Kevin
dc.contributor.author	Snyder, Angela
dc.contributor.author	Paulukonis, Susan
dc.contributor.author	Singh, Ashima
dc.contributor.author	Kayle, Mariam
dc.date.accessioned	2023-06-01T13:42:57Z
dc.date.available	2023-06-01T13:42:57Z
dc.date.issued	2023-07
dc.date.updated	2023-06-01T13:42:57Z
dc.description.abstract	Objective Population-level data on sickle cell disease (SCD) are sparse in the United States. The Centers for Disease Control and Prevention (CDC) is addressing the need for SCD surveillance through state-level Sickle Cell Data Collection Programs (SCDC). The SCDC developed a pilot common informatics infrastructure to standardize processes across states. Materials and methods We describe the process for establishing and maintaining the proposed common informatics infrastructure for a rare disease, starting with a common data model and identify key data elements for public health SCD reporting. Results The proposed model is constructed to allow pooling of table shells across states for comparison. Core Surveillance Data reports are compiled based on aggregate data provided by states to CDC annually. Discussion and conclusion We successfully implemented a pilot SCDC common informatics infrastructure to strengthen our distributed data network and provide a blueprint for similar initiatives in other rare diseases.
dc.identifier	ooad036
dc.identifier.issn	2574-2531
dc.identifier.issn	2574-2531
dc.identifier.uri	https://hdl.handle.net/10161/27484
dc.language	eng
dc.publisher	Oxford University Press (OUP)
dc.relation.ispartof	JAMIA open
dc.relation.isversionof	10.1093/jamiaopen/ooad036
dc.subject	data model
dc.subject	sickle cell
dc.subject	surveillance
dc.title	Common data model for sickle cell disease surveillance: considerations and implications.
dc.type	Journal article
duke.contributor.orcid	Strouse, John J\|0000-0003-0341-1457
duke.contributor.orcid	Kayle, Mariam\|0000-0003-4393-4949
pubs.begin-page	ooad036
pubs.issue	2
pubs.organisational-group	Duke
pubs.organisational-group	School of Medicine
pubs.organisational-group	School of Nursing
pubs.organisational-group	Clinical Science Departments
pubs.organisational-group	Medicine
pubs.organisational-group	Pediatrics
pubs.organisational-group	Medicine, Hematology
pubs.organisational-group	Pediatrics, Hematology-Oncology
pubs.publication-status	Published online
pubs.volume	6