Clinical Follow-Up

The kConFab Clinical Follow-Up Project

Changes to the kConFab Clinical Follow-Up Project

As of 2024, the kConFab Clinical Follow-Up Project is changing the way it follows up participants. We will no longer be sending out three-yearly questionnaires. Instead, we will continue collecting information on participants from data that is routinely collected by cancer registries and government agencies and is suitable for our project requirements.

So, while you will no longer be reminded of your contribution through the arrival of a questionnaire every three years, be assured that you are still very much contributing to advances in how we can treat and reduce the risk of cancer.

We are so grateful for the time that you have given to completing questionnaires in the past.

Our website will remain active, with information about publications that have used the kConFab Clinical Follow-Up Project data. If you need to notify us of any updates, please contact 1800 221 894 or email heather.thorne@petermac.org

In 2001, the kConFab Clinical Follow-Up Project started to collect long-term data on the families in kConFab.

Questionnaires are sent to female kConFab participants every 3 years. The questionnaire asks for updates on:

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)

We also request information on new cancers and relevant surgeries from treating hospitals.

Using the data, we collaborate within Australia and internationally to address important questions for women with breast cancer.

Please see our Publications page for published studies.

Funding sources: