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
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.
Document Details
- Document Type
- Pub Defense Publication
- Publication Date
- Jan 01, 2009
- Source ID
- 10.1155/2009/871250
Entities
People
- Alison Estabrook
- Anne Fatone
- Benjamin W. Pace
- Christina Weltz
- Christine B. Ambrosone
- Dana H Bovbjerg
- Elisa V. Bandera
- Gary Zirpoli
- George Raptis
- Gregory L. Ciupak
- Heiddis Valdimarsdottir
- Helena Furberg
- Helena Hwang
- James Godbold
- James P Reilly
- Joseph Sparano
- Kandace L. Amend
- Karen Pawlish
- Kitaw Demissie
- Lara Sucheston
- Lina Jandorf
- Margaret Kemeny
- Maria Castaldi
- Michelle Roberts
- Paul Tartter
- Sheldon Feldman
- Song Yao
- Thomas Rohan
- Warren Davis
- Yulin Li
Organizations
- Albert Einstein College of Medicine
- Department of Surgery
- Icahn School of Medicine at Mount Sinai
- Jacobi Medical Center
- Montefiore Medical Center
- Mount Sinai Morningside
- Roswell Park Comprehensive Cancer Center
- United States Army Medical Research and Development Command
- University of Medicine and Dentistry of New Jersey
- University of North Carolina at Chapel Hill
- University of Pittsburgh