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The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer

INTRODUCTION: The etiology of familial breast cancer is complex and involves genetic and environmental factors such as hormonal and lifestyle factors. Understanding familial aggregation is a key to understanding the causes of breast cancer and to facilitating the development of effective prevention...

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Autores principales: John, Esther M, Hopper, John L, Beck, Jeanne C, Knight, Julia A, Neuhausen, Susan L, Senie, Ruby T, Ziogas, Argyrios, Andrulis, Irene L, Anton-Culver, Hoda, Boyd, Norman, Buys, Saundra S, Daly, Mary B, O'Malley, Frances P, Santella, Regina M, Southey, Melissa C, Venne, Vickie L, Venter, Deon J, West, Dee W, Whittemore, Alice S, Seminara, Daniela
Formato: Texto
Lenguaje:English
Publicado: BioMed Central 2004
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC468645/
https://www.ncbi.nlm.nih.gov/pubmed/15217505
http://dx.doi.org/10.1186/bcr801
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author John, Esther M
Hopper, John L
Beck, Jeanne C
Knight, Julia A
Neuhausen, Susan L
Senie, Ruby T
Ziogas, Argyrios
Andrulis, Irene L
Anton-Culver, Hoda
Boyd, Norman
Buys, Saundra S
Daly, Mary B
O'Malley, Frances P
Santella, Regina M
Southey, Melissa C
Venne, Vickie L
Venter, Deon J
West, Dee W
Whittemore, Alice S
Seminara, Daniela
author_facet John, Esther M
Hopper, John L
Beck, Jeanne C
Knight, Julia A
Neuhausen, Susan L
Senie, Ruby T
Ziogas, Argyrios
Andrulis, Irene L
Anton-Culver, Hoda
Boyd, Norman
Buys, Saundra S
Daly, Mary B
O'Malley, Frances P
Santella, Regina M
Southey, Melissa C
Venne, Vickie L
Venter, Deon J
West, Dee W
Whittemore, Alice S
Seminara, Daniela
author_sort John, Esther M
collection PubMed
description INTRODUCTION: The etiology of familial breast cancer is complex and involves genetic and environmental factors such as hormonal and lifestyle factors. Understanding familial aggregation is a key to understanding the causes of breast cancer and to facilitating the development of effective prevention and therapy. To address urgent research questions and to expedite the translation of research results to the clinical setting, the National Cancer Institute (USA) supported in 1995 the establishment of a novel research infrastructure, the Breast Cancer Family Registry, a collaboration of six academic and research institutions and their medical affiliates in the USA, Canada, and Australia. METHODS: The sites have developed core family history and epidemiology questionnaires, data dictionaries, and common protocols for biospecimen collection and processing and pathology review. An Informatics Center has been established to collate, manage, and distribute core data. RESULTS: As of September 2003, 9116 population-based and 2834 clinic-based families have been enrolled, including 2346 families from minority populations. Epidemiology questionnaire data are available for 6779 affected probands (with a personal history of breast cancer), 4116 unaffected probands, and 16,526 relatives with or without a personal history of breast or ovarian cancer. The biospecimen repository contains blood or mouthwash samples for 6316 affected probands, 2966 unaffected probands, and 10,763 relatives, and tumor tissue samples for 4293 individuals. CONCLUSION: This resource is available to internal and external researchers for collaborative, interdisciplinary, and translational studies of the genetic epidemiology of breast cancer. Detailed information can be found at the URL .
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spelling pubmed-4686452004-07-16 The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer John, Esther M Hopper, John L Beck, Jeanne C Knight, Julia A Neuhausen, Susan L Senie, Ruby T Ziogas, Argyrios Andrulis, Irene L Anton-Culver, Hoda Boyd, Norman Buys, Saundra S Daly, Mary B O'Malley, Frances P Santella, Regina M Southey, Melissa C Venne, Vickie L Venter, Deon J West, Dee W Whittemore, Alice S Seminara, Daniela Breast Cancer Res Research Article INTRODUCTION: The etiology of familial breast cancer is complex and involves genetic and environmental factors such as hormonal and lifestyle factors. Understanding familial aggregation is a key to understanding the causes of breast cancer and to facilitating the development of effective prevention and therapy. To address urgent research questions and to expedite the translation of research results to the clinical setting, the National Cancer Institute (USA) supported in 1995 the establishment of a novel research infrastructure, the Breast Cancer Family Registry, a collaboration of six academic and research institutions and their medical affiliates in the USA, Canada, and Australia. METHODS: The sites have developed core family history and epidemiology questionnaires, data dictionaries, and common protocols for biospecimen collection and processing and pathology review. An Informatics Center has been established to collate, manage, and distribute core data. RESULTS: As of September 2003, 9116 population-based and 2834 clinic-based families have been enrolled, including 2346 families from minority populations. Epidemiology questionnaire data are available for 6779 affected probands (with a personal history of breast cancer), 4116 unaffected probands, and 16,526 relatives with or without a personal history of breast or ovarian cancer. The biospecimen repository contains blood or mouthwash samples for 6316 affected probands, 2966 unaffected probands, and 10,763 relatives, and tumor tissue samples for 4293 individuals. CONCLUSION: This resource is available to internal and external researchers for collaborative, interdisciplinary, and translational studies of the genetic epidemiology of breast cancer. Detailed information can be found at the URL . BioMed Central 2004 2004-05-19 /pmc/articles/PMC468645/ /pubmed/15217505 http://dx.doi.org/10.1186/bcr801 Text en Copyright © 2004 John et al.; licensee BioMed Central Ltd. This is an Open Access article: verbatim copying and redistribution of this article are permitted in all media for any purpose, provided this notice is preserved along with the article's original URL.
spellingShingle Research Article
John, Esther M
Hopper, John L
Beck, Jeanne C
Knight, Julia A
Neuhausen, Susan L
Senie, Ruby T
Ziogas, Argyrios
Andrulis, Irene L
Anton-Culver, Hoda
Boyd, Norman
Buys, Saundra S
Daly, Mary B
O'Malley, Frances P
Santella, Regina M
Southey, Melissa C
Venne, Vickie L
Venter, Deon J
West, Dee W
Whittemore, Alice S
Seminara, Daniela
The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer
title The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer
title_full The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer
title_fullStr The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer
title_full_unstemmed The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer
title_short The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer
title_sort breast cancer family registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC468645/
https://www.ncbi.nlm.nih.gov/pubmed/15217505
http://dx.doi.org/10.1186/bcr801
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