The kConFab Clinical Follow-Up Project

Collaborator Information

If you would be interested in potentially collaborating, using kConFab Clinical Follow-Up data, please contact us at: kelly.phillips@petermac.org

Until 2023, the kConFab Clinical Follow-Up Project collected follow-up information every three years from women enrolled in kConFab between 1997 - 2008. Prof Kelly-Anne Phillips is the PI and lead of the project since it's initiation. 

We received at least one completed follow-up questionnaire for 80% of the study cohort; overall our response rate is 70%.

Questionnaires sent to participants ask about:

  • Demographic information
  • Medical history (cancer screening, new cancer diagnoses, cancer treatment history, cancer-related surgeries)
  • Family history
  • Medications
  • Pregnancies and breastfeeding
  • Hormonal contraception
  • Hormone replacement therapy
  • Cancer prevention medications
  • Lifestyle factors (exercise, smoking, alcohol) 

Tumour characteristics verified include:

  • Histology/Behaviour
  • Tumour size
  • Stage
  • Grade
  • Lymph nodes examined and positive
  • ER status
  • PR status
  • HER2 status
  • T, N and M stage characteristics

Our data is of high quality; it is checked in real time, as questionnaires are returned. We check against previous responses for consistency, and contact women for missing or inconsistent information.

Our data dictionary is available for download: DataDictionary

We have follow-up data for:

Type Number
Families 1,256
Women  6,052
BRCA1 carrier  598
BRCA2 carrier 525
Women with verified breast cancer (primary) 2,261
Women with verified ovarian, fallopian tube or primary peritoneal cancer (primary)   151
Women with verified other cancer (primary)  569

Data information last updated 09/07/2021