The Breast Cancer Collaborative Registry
is a web-based system developed by the Fred & Pamela Buffett Cancer Center at
the University of Nebraska Medical Center and operating under the umbrella of the integrated Cancer Data Repository for Cancer Research (iCaRe2
). The BCCR is designed
to provide collaborative platform to centers with expertise in breast cancer epidemiology,
genetics, biology, early detection and patient care with the goal to facilitate
rapid and uniform collection of critical information and biological
samples to be used in developing prevention and treatment strategies
against breast cancer.
The purpose of this project is to develop a national breast cancer
resource, which collects demographic and lifestyle information, medical and family
details, dietary and environmental exposure history
as well as biospecimens from breast cancer patients,
women at increased risk for breast cancer, and their family members.
The BCCR available to all institutions interested in studies of
risk factors influencing breast cancer development, progression and treatment or the effect of the disease and different treatments on the quality of life of breast cancer survivors. Institutional IRB approval and patient informed consent must be obtained.
The BCCR is committed to protecting each individual’s confidentiality/privacy
online. Security issues are addressed using recommendations of
the Healthcare Information and Management Systems Society (HIMSS)
Privacy & Security Toolkit and the electronic information
security standards regarding the collection, use, and retention
of data mandated by the Federal Health Insurance Portability and
Accountability Act (HIPAA).