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

被引：102

作者：

Ambrosone, Christine B. ^{[1
]}

Ciupak, Gregory L. ^{[1
]}

Bandera, Elisa V. ^{[2
]}

Jandorf, Lina ^{[3
]}

Bovbjerg, Dana H. ^{[4
]}

Zirpoli, Gary ^{[1
]}

Pawlish, Karen ^{[5
]}

Godbold, James ^{[3
]}

Furberg, Helena ^{[6
]}

Fatone, Anne ^{[3
]}

Valdimarsdottir, Heiddis ^{[3
]}

Yao, Song ^{[1
]}

Li, Yulin ^{[1
]}

Hwang, Helena ^{[1
]}

Davis, Warren ^{[1
]}

Roberts, Michelle ^{[1
]}

Sucheston, Lara ^{[1
]}

Demissie, Kitaw ^{[7
]}

Amend, Kandace L. ^{[8
]}

Tartter, Paul ^{[9
]}

Reilly, James ^{[10
]}

Pace, Benjamin W. ^{[3
]}

Rohan, Thomas ^{[11
]}

Sparano, Joseph ^{[12
,13
,14
]}

Raptis, George ^{[3
]}

Castaldi, Maria ^{[15
]}

Estabrook, Alison ^{[9
]}

Feldman, Sheldon ^{[16
]}

Weltz, Christina ^{[3
]}

Kemeny, Margaret ^{[17
]}

机构：

[1] Roswell Pk Canc Inst, Dept Canc Prevent & Control, Elm & Carlton St, Buffalo, NY 14263 USA

[2] UMDNJs Robert Wood Johnson Med Sch, Canc Inst New Jersey, New Brunswick, NJ 08903 USA

[3] Mt Sinai Sch Med, New York, NY 10029 USA

[4] Univ Pittsburgh, Dept Med, Inst Canc, Pittsburgh, PA 15232 USA

[5] New Jersey State Dept Hlth & Senior Serv, Canc Epidemiol Serv, Trenton, NJ 08625 USA

[6] Univ N Carolina, Dept Genet, Chapel Hill, NC 27599 USA

[7] Univ Med & Dent NJ, Sch Publ Hlth, Piscataway, NJ 08854 USA

[8] I3 Drug Safety, Ann Arbor, MI 48108 USA

[9] St Lukes Roosevelt Hosp, Dept Breast & Oncol Surg, New York, NY 10025 USA

[10] SUNY Downstate Coll Med, Kings Cty Hosp Ctr, Kings Cty Hosp, Dept Surg, Brooklyn, NY 11203 USA

[11] Albert Einstein Coll Med, Dept Epidemiol & Populat Hlth, Bronx, NY 10461 USA

[12] Montefiore Med Ctr, Jack D Weiler Hosp, Dept Med, Bronx, NY 10461 USA

[13] Montefiore Med Ctr, Jack D Weiler Hosp, Dept Obstet, Bronx, NY 10461 USA

[14] Montefiore Med Ctr, Jack D Weiler Hosp, Dept Gynecol, Bronx, NY 10461 USA

[15] Jacobi Med Ctr, Dept Surg, Bronx, NY 10461 USA

[16] New York Presbyterian Columbia, Dept Surg, New York, NY 10032 USA

[17] Queens Hosp Ctr, Queens Canc Ctr, Dept Surg Oncol, New York, NY 11432 USA

来源：

JOURNAL OF ONCOLOGY | 2009年 / 2009卷

关键词：

D O I：

10.1155/2009/871250

中图分类号：

R73 [肿瘤学];

学科分类号：

100214 ;

摘要：

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. Copyright (C) 2009 Christine B. Ambrosone et al.

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