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