University of Wisconsin–Madison Medical College of Wisconsin

Surveillance for the Rare Condition of Sickle Cell Disease in Wisconsin

Ashima Singh, MS, PhD; Mahua Dasgupta, MS; Dawn Retherford, BS; Mei Baker, MD; Mary Hulihan, DrPH; Amanda M. Brandow, DO, MS

WMJ. 2022;121(4):297-300

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Background: Despite universal newborn screening, there is no comprehensive surveillance system to understand the sickle cell disease population in Wisconsin.

Methods: We initiated the development of a sickle cell disease surveillance system by linking newborn screening data and electronic health records from 2 large tertiary health care institutions in Wisconsin: Children’s Wisconsin and Froedtert Hospital.

Results: There were 1478 individuals within the 3 data sources. One hundred thirty-two (82%) of 159 identified by newborn screening from 2013 through 2019 received care at Children’s Wisconsin. The majority of individuals with sickle cell disease at Children’s Wisconsin and Froedtert Hospital resided in Milwaukee County.

Discussion: The new surveillance program will increase our understanding of the sickle cell disease population in Wisconsin and help improve quality of care and health outcomes.

Author Affiliations: Department of Pediatrics, Section of Hematology/Oncology/Bone Marrow Transplantation, Medical College of Wisconsin, Milwaukee, Wisconsin (Singh, Dasgupta, Brandow); Wisconsin State Laboratory of Hygiene, University of Wisconsin, Madison, Wis (Baker); Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Division of Blood Disorders, Atlanta, Georgia (Hulihan); Children’s Wisconsin, Milwaukee, Wis (Brandow).
Corresponding Author: Ashima Singh, MS, PhD, Medical College of Wisconsin, Milwaukee, WI; phone 414.955.5772; email; ORCID ID 0000-0002-1270-8132
Acknowledgements: The authors wish to thank the members of the Bioinformatics team of the Clinical and Translational Science Institute of Southeast Wisconsin, who, under the leadership of Bradley Taylor, maintain the i2b2 electronic health record data warehouse for Children’s Wisconsin and Froedtert Hospital. They would also like to acknowledge Mandie Loehe and Sandra Dawe and thank them for their contribution of newborn screening data collection. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
Funding/Support: This project is supported by funding from the Centers for Disease Control and Prevention, CDC-RFA-DD20-2003 (Grant #1 NU58DD000013-01-00).
Financial Disclosures: None declared.
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