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

Publication ,  Journal Article
Smeltzer, MP; Reeves, SL; Cooper, WO; Attell, BK; Strouse, JJ; Takemoto, CM; Kanter, J; Latta, K; Plaxco, AP; Davis, RL; Hatch, D; Reyes, C ...
Published in: JAMIA open
July 2023

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.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.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.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.

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Published In

JAMIA open

DOI

EISSN

2574-2531

ISSN

2574-2531

Publication Date

July 2023

Volume

6

Issue

2

Start / End Page

ooad036

Related Subject Headings

  • 4203 Health services and systems
 

Citation

APA
Chicago
ICMJE
MLA
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Smeltzer, M. P., Reeves, S. L., Cooper, W. O., Attell, B. K., Strouse, J. J., Takemoto, C. M., … Kayle, M. (2023). Common data model for sickle cell disease surveillance: considerations and implications. JAMIA Open, 6(2), ooad036. https://doi.org/10.1093/jamiaopen/ooad036
Smeltzer, Matthew P., Sarah L. Reeves, William O. Cooper, Brandon K. Attell, John J. Strouse, Clifford M. Takemoto, Julie Kanter, et al. “Common data model for sickle cell disease surveillance: considerations and implications.JAMIA Open 6, no. 2 (July 2023): ooad036. https://doi.org/10.1093/jamiaopen/ooad036.
Smeltzer MP, Reeves SL, Cooper WO, Attell BK, Strouse JJ, Takemoto CM, et al. Common data model for sickle cell disease surveillance: considerations and implications. JAMIA open. 2023 Jul;6(2):ooad036.
Smeltzer, Matthew P., et al. “Common data model for sickle cell disease surveillance: considerations and implications.JAMIA Open, vol. 6, no. 2, July 2023, p. ooad036. Epmc, doi:10.1093/jamiaopen/ooad036.
Smeltzer MP, Reeves SL, Cooper WO, Attell BK, Strouse JJ, Takemoto CM, Kanter J, Latta K, Plaxco AP, Davis RL, Hatch D, Reyes C, Dombkowski K, Snyder A, Paulukonis S, Singh A, Kayle M. Common data model for sickle cell disease surveillance: considerations and implications. JAMIA open. 2023 Jul;6(2):ooad036.
Journal cover image

Published In

JAMIA open

DOI

EISSN

2574-2531

ISSN

2574-2531

Publication Date

July 2023

Volume

6

Issue

2

Start / End Page

ooad036

Related Subject Headings

  • 4203 Health services and systems