Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study

Maria C. Katapodi*, Deb Duquette, James J. Yang, Kari Mendelsohn-Victor, Beth Anderson, Christos Nikolaidis, Emily Mancewicz, Laurel L. Northouse, Sonia Duffy, David Ronis, Kara J. Milliron, Nicole Probst-Herbst, Sofia D. Merajver, Nancy K. Janz, Glenn Copeland, Scott Roberts

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

13 Scopus citations


Purpose: Cancer genetic services (counseling/testing) are recommended for women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors—YBCS) and at-risk relatives. We present recruitment of YBCS, identification and recruitment of at-risk relatives, and YBCS willingness to contact their cancer-free, female relatives. Methods: A random sample of 3,000 YBCS, stratified by race (Black vs. White/Other), was identified through a population-based cancer registry and recruited in a randomized trial designed to increase use of cancer genetic services. Baseline demographic, clinical, and family characteristics, and variables associated with the Theory of Planned Behavior (TPB) were assessed as predictors of YBCS’ willingness to contact at-risk relatives. Results: The 883 YBCS (33.2% response rate; 40% Black) who returned a survey had 1,875 at-risk relatives and were willing to contact 1,360 (72.5%). From 853 invited at-risk relatives (up to two relatives per YBCS), 442 responded (51.6% response rate). YBCS with larger families, with a previous diagnosis of depression, and motivated to comply with recommendations from family members were likely to contact a greater number of relatives. Black YBCS were more likely to contact younger relatives and those living further than 50 miles compared to White/Other YBCS. Conclusion: It is feasible to recruit diverse families at risk for hereditary cancer from a population-based cancer registry. This recruitment approach can be used as a paradigm for harmonizing processes and increasing internal and external validity of large-scale public health genomic initiatives in the era of precision medicine.

Original languageEnglish (US)
Pages (from-to)191-201
Number of pages11
JournalCancer Causes and Control
Issue number3
StatePublished - Mar 1 2017


  • At-risk relatives
  • Cancer registry
  • Public health genomic trials
  • Recruitment
  • Young breast cancer survivors

ASJC Scopus subject areas

  • Oncology
  • Cancer Research


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