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在 HIPAA 时代进行分子流行病学研究:非裔美国人和欧裔美国女性乳腺癌的多机构病例对照研究。

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.

机构信息

Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA.

出版信息

J Oncol. 2009;2009:871250. doi: 10.1155/2009/871250. Epub 2009 Oct 25.

DOI:10.1155/2009/871250
PMID:19865486
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2766507/
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.

摘要

非裔美国(AA)女性的乳腺癌发病年龄早于欧洲裔美国(EA)女性,并且更有可能具有与预后不良相关的侵袭性特征,例如高级别和雌激素受体(ER)阴性状态。这些差异的机制尚不清楚。为了解决这个问题,我们进行了一项病例对照研究,以评估 AA 和 EA 女性中高级别 ER 疾病的风险因素。随着 1996 年《健康保险携带和责任法案》的颁布,需要采取创造性的措施来适应新的患者隐私环境下的病例发现和联系程序。在本文中,我们报告了我们在纽约和新泽西州开展乳腺癌多中心研究的方法,按种族报告了病例和对照参与者的人口统计学和病理特征的初步分布,并对比了不同病例发现方法的参与率,同时讨论了其优缺点。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3094/2766507/4979c203326a/JO2009-871250.001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3094/2766507/4979c203326a/JO2009-871250.001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3094/2766507/4979c203326a/JO2009-871250.001.jpg

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