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 Tartter; James Reilly; Benjamin W Pace; Thomas Rohan; Joseph Sparano; George Raptis; Maria Castaldi; Alison Estabrook; Sheldon Feldman; Christina Weltz; Margaret Kemeny

doi:10.1155/2009/871250

Back

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 article

Open access

Peer reviewed

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, …

Journal of oncology, Vol.2009, pp.871250-15

2009

DOI: https://doi.org/10.1155/2009/871250

PMCID: PMC2766507

PMID: 19865486

Abstract

Clinical Study

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.

Files and links (1)

url

https://doi.org/10.1155/2009/871250View

Version of Record (VoR) Open

Metrics

9 Record Views

100 Times Cited - Web of Science

Details

Title: 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
Creators: Christine B Ambrosone - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Gregory L Ciupak - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Elisa V Bandera - Cancer Institute of New Jersey, UMDNJ's Robert Wood Johnson Medical School, 195 Little Albany Street, New Brunswick, NJ 08903-2681, USA
Lina Jandorf - Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, USA
Dana H Bovbjerg - Department of Medicine, University of Pittsburgh Cancer Institute, 5150 Centre Avenue, Pittsburgh, PA 15232, USA
Gary Zirpoli - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Karen Pawlish - Cancer Epidemiology Services, New Jersey State Department of Health and Senior Services, P. O. Box 369, Trenton, NJ 08625-0369, USA
James Godbold - Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, USA
Helena Furberg - Department of Genetics, University of North Carolina at Chapel Hill, 120 Mason Farm Road, 5000 D, GMB, CB number 7264, UNC-Chapel Hill, Chapel Hill, NC 27599-7264, USA
Anne Fatone - Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, USA
Heiddis Valdimarsdottir - Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, USA
Song Yao - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Yulin Li - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Helena Hwang - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Warren Davis - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Michelle Roberts - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Lara Sucheston - Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA
Kitaw Demissie - School of Public Health, University of Medicine and Dentistry of NJ, 683 Hoes Lane West, Building RWJ-SPH, Room 212, Piscataway, NJ 08854, USA
Kandace L Amend - i3 Drug Safety, 5430 Data Court, Street number 200, Ann Arbor, MI 48108, USA
Paul Tartter - Department of Breast and Oncology Surgery, St. Luke's-Roosevelt Hospital, 1111 Amsterdam Avenue, New York, NY 10025, USA
James Reilly - Department of Surgery, Kings County Hospital, Kings County Hospital Center, SUNY-Downstate College of Medicine, 451 Clarkson Avenue, Brooklyn, NY11203, USA
Benjamin W Pace - Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, USA
Thomas Rohan - Department of Epidemiology and Population Health, Albert Einstein College of Medicine, Jack and Pearl Resnick Campus, 1300 Morris Park Avenue, Bronx, NY 10461, USA
Joseph Sparano - Departments of Medicine, Obstetrics and Gynecology, Montefiore Medical Center, Jack D. Weiler Hospital, 1825 Eastchester Road, Room 2S-47-48, Bronx, NY 10461, USA
George Raptis - Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, USA
Maria Castaldi - Department of Surgery, Jacobi Medical Center, 1400 Pelham Parkway South, Bronx, NY 10461, USA
Alison Estabrook - Department of Breast and Oncology Surgery, St. Luke's-Roosevelt Hospital, 1111 Amsterdam Avenue, New York, NY 10025, USA
Sheldon Feldman - Department of Surgery, New York-Presbyterian/Columbia, 161 Fort Washington Avenue, Street 1025, New York, NY 10032, USA
Christina Weltz - Mount Sinai School of Medicine, One Gustave L. Levy Place, New York, NY 10029, USA
Margaret Kemeny - Department of Surgical Oncology, Queens Cancer Center, Queens Hospital Center, 82-68 164th Street, New Bldg, 5th floor, Jamaica, New York, NY 11432, USA
Publication Details: Journal of oncology, Vol.2009, pp.871250-15
Date published: 2009
Publisher: Hindawi Publishing Corporation
Academic Unit: Cancer Epidemiology and Health Outcomes
Language: English
Resource Type: Journal article
Identifiers: 991031665322804646