Conducting molecular epidemiological research in the age of HIPAA: A multi-institutional case-control study of breast cancer in African-American and European-American women

Christine B. Ambrosone, Gregory L. Ciupak, Elisa V. Bandera, Lina Jandorf, Dana H. Bovbjerg, Gary Zirpoli, Karen Pawlish, James Godbold, Helena Furberg, Anne Fatone, Heiddis Valdimarsdottir, Song Yao, Yulin Li, Helena Hwang, Warren Davis, Michelle Roberts, Lara Sucheston, Kitaw Demissie, Kandace L. Amend, Paul TartterJames Reilly, Benjamin W. Pace, Thomas Rohan, Joseph Sparano, George Raptis, Maria Castaldi, Alison Estabrook, Sheldon Feldman, Christina Weltz, Margaret Kemeny

Research output: Contribution to journalArticle

72 Scopus citations

Abstract

Breast cancer in African-American (AA) women occurs at an earlier age than in European-American (EA) women and is more likely to have aggressive features associated with poorer prognosis, such as high-grade and negative estrogen receptor (ER) status. The mechanisms underlying these differences are unknown. To address this, we conducted a case-control study to evaluate risk factors for high-grade ER- disease in both AA and EA women. With the onset of the Health Insurance Portability and Accountability Act of 1996, creative measures were needed to adapt case ascertainment and contact procedures to this new environment of patient privacy. In this paper, we report on our approach to establishing a multicenter study of breast cancer in New York and New Jersey, provide preliminary distributions of demographic and pathologic characteristics among case and control participants by race, and contrast participation rates by approaches to case ascertainment, with discussion of strengths and weaknesses.

Original languageEnglish (US)
Article number871250
JournalJournal of Oncology
DOIs
StatePublished - Dec 28 2009

ASJC Scopus subject areas

  • Oncology

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    Ambrosone, C. B., Ciupak, G. L., Bandera, E. V., Jandorf, L., Bovbjerg, D. H., Zirpoli, G., Pawlish, K., Godbold, J., Furberg, H., Fatone, A., Valdimarsdottir, H., Yao, S., Li, Y., Hwang, H., Davis, W., Roberts, M., Sucheston, L., Demissie, K., Amend, K. L., ... Kemeny, M. (2009). Conducting molecular epidemiological research in the age of HIPAA: A multi-institutional case-control study of breast cancer in African-American and European-American women. Journal of Oncology, [871250]. https://doi.org/10.1155/2009/871250