The Cooperative Familial Registry for Breast Cancer Studies: design and first year recruitment rates in Ontario

J Clin Epidemiol. 2001 Jan;54(1):93-8. doi: 10.1016/s0895-4356(00)00263-8.


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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Breast Neoplasms / blood
  • Breast Neoplasms / epidemiology*
  • Breast Neoplasms / genetics*
  • Data Collection / methods*
  • Databases, Factual* / statistics & numerical data
  • Female
  • Genetic Predisposition to Disease / genetics
  • Humans
  • International Cooperation*
  • Medical History Taking / methods*
  • Ontario / epidemiology
  • Patient Care Team / organization & administration
  • Patient Selection*
  • Pedigree
  • Program Development / methods*
  • Registries* / statistics & numerical data
  • Research Design*
  • Risk Factors
  • Surveys and Questionnaires*