title: The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  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 http://www.cfr.epi.uci.edu/.
authors.affiliation: Clinical and Genetic Epidemiology Research Branch, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland, USA. seminard@epndce.nci.nih.gov
authors.forename: Esther M
authors.initials: EM
authors.lastname: John
authors.forename: John L
authors.initials: JL
authors.lastname: Hopper
authors.forename: Jeanne C
authors.initials: JC
authors.lastname: Beck
authors.forename: Julia A
authors.initials: JA
authors.lastname: Knight
authors.forename: Susan L
authors.initials: SL
authors.lastname: Neuhausen
authors.forename: Ruby T
authors.initials: RT
authors.lastname: Senie
authors.forename: Argyrios
authors.initials: A
authors.lastname: Ziogas
authors.forename: Irene L
authors.initials: IL
authors.lastname: Andrulis
authors.forename: Hoda
authors.initials: H
authors.lastname: Anton-Culver
authors.forename: Norman
authors.initials: N
authors.lastname: Boyd
authors.forename: Saundra S
authors.initials: SS
authors.lastname: Buys
authors.forename: Mary B
authors.initials: MB
authors.lastname: Daly
authors.forename: Frances P
authors.initials: FP
authors.lastname: O'Malley
authors.forename: Regina M
authors.initials: RM
authors.lastname: Santella
authors.forename: Melissa C
authors.initials: MC
authors.lastname: Southey
authors.forename: Vickie L
authors.initials: VL
authors.lastname: Venne
authors.forename: Deon J
authors.initials: DJ
authors.lastname: Venter
authors.forename: Dee W
authors.initials: DW
authors.lastname: West
authors.forename: Alice S
authors.initials: AS
authors.lastname: Whittemore
authors.forename: Daniela
authors.initials: D
authors.lastname: Seminara
mesh_terms: D017677:Age Distribution; D001943:Breast Neoplasms / Q000453:epidemiology* / Q000208:ethnology / Q000235:genetics*; D018567:Breast Neoplasms, Male / Q000453:epidemiology / Q000208:ethnology / Q000235:genetics; D003299:Cooperative Behavior; D004252:DNA Mutational Analysis / Q000379:methods; D004273:DNA, Neoplasm / Q000235:genetics; D005191:Family Characteristics / Q000208:ethnology; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006801:Humans; D008297:Male; D017720:Molecular Epidemiology / Q000639:trends*; D015337:Multicenter Studies as Topic / Q000379:methods; D010051:Ovarian Neoplasms / Q000453:epidemiology / Q000208:ethnology / Q000235:genetics; D018579:Patient Selection; D011159:Population Surveillance / Q000379:methods; D012042:Registries; D017678:Sex Distribution
chemical_list: D004273:DNA, Neoplasm