A Breast Cancer Information Registry for Participants With Breast Cancer or Characteristics of Hereditary Breast Cancer



Status:Recruiting
Conditions:Breast Cancer, Cancer
Therapuetic Areas:Oncology
Healthy:No
Age Range:19 - 120
Updated:4/21/2016
Start Date:October 2006
End Date:December 2020
Contact:Michelle Desler, MS
Email:mdesler@unmc.edu
Phone:402-559-8885

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Development and Implementation of The Breast Cancer Collaborative Registry (BCCR)

RATIONALE: Gathering information about patients with breast cancer and their families may
help the study of breast cancer in the future.

PURPOSE: This clinical trial is gathering information about patients with breast cancer and
their families.

OBJECTIVES:

- To develop a web-based Breast Cancer Collaborative Registry (BCCR) as a repository for
socio-demographic, environmental, clinical history, family history, and biospecimen
data collected at the National Comprehensive Cancer Network (NCCN) centers for
participants with a personal history of breast cancer and/or characteristics of
hereditary breast cancer.

- To merge the data already being collected on breast cancer patients under the Adult
Oncology Data Collection Study and newly diagnosed breast cancer patients participating
in the NCCN Data Coordinating study at UNMC/NMC.

- To standardize clinical, environmental, socio-demographic, and family history data for
breast cancer-related information to be collected and shared for research purposes by
Eppley Breast Cancer Research Group breast cancer research collaborators.

- To collect, validate, and disseminate the breast cancer-related data to establish a
high-risk cohort for future research into the molecular and biological bases of breast
cancer susceptibility and interventional trials.

OUTLINE: This is a multicenter study.

Study participants undergo data collection related to breast cancer studies at one of the
National Comprehensive Cancer Network (NCCN) centers for inclusion in the Breast Cancer
Collaborative Registry (BCCR). The BCCR is a comprehensive computerized database that serves
as a repository for socio-demographic, environmental, clinical history, family history, and
biospecimen data collected for breast cancer patients treated on UNMC protocols. Central
features of the registry include standardized data-entry forms and a relational database
that can be used as a resource for the study of the pathology, immunology, cytogenetics,
molecular biology, epidemiology, clinical features, and outcome of patients with benign,
pre-malignant, or malignant breast disease.

Study participants complete a self-administered electronic or paper-based survey and a
medical history questionnaire at baseline to provide information on demographics (e.g., age
and sex); personal and family medical history; treatment history; lifestyle, physical
activity, and dietary habits; quality of life; environmental exposure history; and the
family tree for inclusion in the registry. Participants also undergo telephone or in-person
structured interviews conducted by study coordinators, genetic counselors, or the System
Coordinator of the BCCR to provide additional information or clarification of the
information provided in the questionnaires.

Study participants also undergo review of their medical records and pathology reports to
obtain detailed medical and treatment-related information for inclusion in the registry. The
information collected includes retrospective and prospective disease-specific data (e.g.,
diagnosis, grade/stage, and laboratory values) and longitudinal outcome data (e.g., response
to treatment, toxicity, survival, relapse) derived during prospective clinical follow-up.

Study participants are followed periodically to update relevant health and family histories.

DISEASE CHARACTERISTICS:

- Recruited by a participating physician and meets at least 1 of the following
criteria:

- Current diagnosis or history of breast cancer, atypical hyperplasia, ductal
carcinoma in situ (DCIS) or lobular carcinoma in situ (LCIS) as defined in the
National Comprehensive Cancer Network Breast and/or Ovarian Genetic Assessment
Guidelines, v.1.2006

- Characteristics of hereditary breast cancer, as defined in the National
Comprehensive Cancer Network Breast and/or Ovarian Genetic Assessment
Guidelines, v.1.2006 (relatives have been diagnosed with breast and/or ovarian
cancer) OR have a breast cancer risk of > 1.67% over 5 years as estimated by the
GAIL Model

- Hormone receptor status not specified

PATIENT CHARACTERISTICS:

- Male or female

- Menopausal status not specified

PRIOR CONCURRENT THERAPY:

- Not specified
We found this trial at
44
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Rutland, Vermont 05701
Principal Investigator: Allan D Eisemann, MD
Phone: 802-747-1692
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985950 Nebraska Medical Center
Omaha, Nebraska 68198
402-559-4090
Principal Investigator: Kenneth Cowan, M.D., Ph.D.
Phone: 402-559-8885
UNMC Eppley Cancer Center at the University of Nebraska Medical Center The Fred & Pamela...
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Omaha, NE
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Aberdeen, South Dakota 57401
Principal Investigator: Richard Conklin, MD
Phone: 605-622-5613
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Anderson, Indiana 46011
Principal Investigator: Shiroo Parshad, MD
Phone: 765-298-2044
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Anderson, Indiana 46011
Principal Investigator: Shiroo Parshad, MD
Phone: 765-298-2044
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Anderson, Indiana 46011
Principal Investigator: Shiroo Pashad, MD
Phone: 765-298-2044
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Aurora, Illinois 60507
Principal Investigator: Joseph T Meschi, MD
Phone: 630-978-6212
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Brookfield, Wisconsin 53045
Principal Investigator: Jonathan Treisman, MD
Phone: 262-780-4347
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Colorado Springs, Colorado 80907
Principal Investigator: Kate Crow, MS CGC
Phone: 719-776-5270
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Daytona Beach, Florida 32117
Principal Investigator: T C Windham, MD, FACS
Phone: 386-231-4023
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Franklin, Wisconsin 53132
Principal Investigator: Jonathan Treisman, MD
Phone: 414-427-2360
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Glens Falls, New York 12801
Phone: 518-926-6701
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Grand Island, Nebraska 68803
Principal Investigator: Mehmet Copur, M.D.
Phone: 308-398-6518
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Grand Island, NE
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Hastings, Nebraska 68901
Principal Investigator: Shamila Garg, MD
Phone: 402-460-5899
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Holyoke, Massachusetts 01040
Principal Investigator: Zubeena Mateen, M.D.
Phone: 413-534-2500
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Indianapolis, Indiana 46256
Principal Investigator: Anuj Agarwala, MD
Phone: 317-497-2836
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Indianapolis, Indiana 46227
Principal Investigator: Anuj Agarwala, MD
Phone: 317-497-2836
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Indianapolis, Indiana 46256
Principal Investigator: Anuj Agarwala, MD
Phone: 317-497-2836
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Joplin, Missouri 64804
Principal Investigator: Samir Dalia, MD
Phone: 417-556-3076
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Kansas City, Missouri 64086
Principal Investigator: Timothy Pluard, MD
Phone: 816-287-6057
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Kansas City, Missouri 64118
Principal Investigator: Timothy Pluard, MD
Phone: 816-287-6057
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4321 Washington Street #4000
Kansas City, Missouri 64111
(816) 932-3300
Principal Investigator: Timothy Pluard, MD
Phone: 816-287-6057
Saint Luke's Cancer Institute Hope is an important part of the arsenal that helps patients...
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Kearney, Nebraska 68847
Principal Investigator: George Bascom, M.D.
Phone: 308-865-7564
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Liberty, Missouri 64068
Principal Investigator: Timothy Pluard, MD
Phone: 816-287-6057
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Lincoln, Nebraska 68510
Principal Investigator: Kevin Yiee, M.D.
Phone: 402-219-7912
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Mason City, Iowa 50401
Principal Investigator: Arvind Vemula, MD
Phone: 641-428-6304
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Minot, North Dakota 58701
Principal Investigator: Michael Grant, MD
Phone: 701-857-3174
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Mitchell, South Dakota 57301
Principal Investigator: Stephen J Dick, MD
Phone: 605-995-5725
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Norfolk, Nebraska 68701
Phone: 402-644-7534
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North Platte, Nebraska 69101
Principal Investigator: Irfan Vaziri, MD
Phone: 308-696-7386
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Orange City, Florida 32763
Principal Investigator: T C Windham, MD, FACS
Phone: 386-231-4023
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Overland Park, Kansas 66213
Principal Investigator: Timothy Pluard, MD
Phone: 816-287-6057
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60 Memorial Medical Parkway
Palm Coast, Florida 32164
Principal Investigator: T C Windham, MD, FACS
Phone: 386-231-4023
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Plymouth, Massachusetts 02360
Principal Investigator: James M Koomey, MD
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Racine, Wisconsin 53405
Principal Investigator: Shayan Rayani, MD
Phone: 262-687-5057
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Rapid City, South Dakota 57701
Principal Investigator: Daniel Petereit, MD
Phone: 605-755-2325
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Scottsbluff, Nebraska 69361
Principal Investigator: Vince Bjorling, MD
Phone: 308-630-2429
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Sioux Falls, South Dakota 57105
Principal Investigator: Amy Krie, M.D.
Phone: 605-322-3095
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Spencer, Iowa 51301
Principal Investigator: Glenn Preston
Phone: 712-264-8691
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Waterloo, Iowa 50702
Principal Investigator: Mohammed Masri, MD
Phone: 319-272-2388
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Wauwatosa, Wisconsin 53226
Principal Investigator: Jonathan Treisman, MD
Phone: 414-259-7486
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Westminster, Maryland 21157
Principal Investigator: Johanna DiMento, MD
Phone: 410-871-7450
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Worcester, Massachusetts 01608
Principal Investigator: James Rooney, M.D.
Phone: 508-363-7018
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Yorkville, Illinois 60560
Principal Investigator: Joseph T Meschi, MD
Phone: 630-978-6212
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