Journal of Clinical Epidemiology
Volume 54, Issue 1 , Pages 93-98, January 2001

The Cooperative Familial Registry for Breast Cancer Studies:

design and first year recruitment rates in Ontario

  • Heather J Sutherland

      Affiliations

    • The Ontario Familial Breast Cancer Registry, 610 University Avenue, Toronto, Ontario M5G 2M9, Canada
    • Corresponding Author InformationCorresponding author. Tel.: (416) 946-4409; fax: (416) 946-4410.
  • ,
  • Jeanie Lacroix

      Affiliations

    • Cancer Care Ontario, Toronto, Ontario, Canada
  • ,
  • Julia Knight

      Affiliations

    • Cancer Care Ontario, Toronto, Ontario, Canada
  • ,
  • Irene L Andrulis

      Affiliations

    • Ontario Cancer Genetics Network and Lunenfeld Institute, Mount Sinai Hospital, Toronto, Ontario, Canada
  • ,
  • Norman F Boyd

      Affiliations

    • Epidemiology, Statistics and Behavioral Research, Ontario Cancer Institute, Toronto, Ontario, Canada
  • ,
  • the Ontario Cancer Genetics Network

      Affiliations

    • Ontario Cancer Genetics Network, Cancer Care Ontario, Toronto, Ontario, Canada

Received 7 January 2000; received in revised form 4 April 2000; accepted 17 April 2000.

Abstract 

The Ontario Familial Breast Cancer Registry (OFBCR) is one of six international sites of the Cooperative Familial Registry for Breast Cancer Studies collecting family history, epidemiologic information, and blood samples from families (with various patterns of familial risk) for the purpose of studying the etiology of breast cancer. To invite 2361 female breast cancer patients residing in Ontario to take part in the Registry, a package was sent that included a Family History Questionnaire. Several variations of mailing and follow-up strategies were employed. Overall, the response rate was 67%. The best response (74%) was achieved by following up our introductory package of information with a postcard 10 days later and a telephone call several weeks thereafter. Given the design of the project, which involves a considerable commitment on the part of both patients and their family members, we are impressed by the positive response of these women.

Keywords:  Familial breast cancer, Recruitment methods

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PII: S0895-4356(00)00263-8

Journal of Clinical Epidemiology
Volume 54, Issue 1 , Pages 93-98, January 2001