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.
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.
Ambrosone
Christine B
CB
Department of Cancer Prevention & Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263, USA.
Ciupak
Gregory L
GL
Bandera
Elisa V
EV
Jandorf
Lina
L
Bovbjerg
Dana H
DH
Zirpoli
Gary
G
Pawlish
Karen
K
Godbold
James
J
Furberg
Helena
H
Fatone
Anne
A
Valdimarsdottir
Heiddis
H
Yao
Song
S
Li
Yulin
Y
Hwang
Helena
H
Davis
Warren
W
Roberts
Michelle
M
Sucheston
Lara
L
Demissie
Kitaw
K
Amend
Kandace L
KL
Tartter
Paul
P
Reilly
James
J
Pace
Benjamin W
BW
Rohan
Thomas
T
Sparano
Joseph
J
Raptis
George
G
Castaldi
Maria
M
Estabrook
Alison
A
Feldman
Sheldon
S
Weltz
Christina
C
Kemeny
Margaret
M