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