Who: The Centre For Translational Research, Royal North Shore Hospital (RNSH)
The NF1 Breast Screening Study is the first of its kind in Australia and commenced at RNSH in response to evidence that women with NF1 are at an increased risk of breast cancer, especially those aged between 35-50 years.
The aim of the study was to establish a successful breast screening program in women with NF1 which encompasses:
- Screening all women with NF1 who are at an increased risk of breast cancer
- Ensuring that screening is done with the most appropriate test
- Ensuring the screening study does not cause unnecessary psychological distress
- Ensuring these women are linked into a high-risk breast clinic for ongoing surveillance and care.
The study is still in its recruitment and analysis phase. These women have also been successfully integrated into the high-risk breast cancer clinic at RNSH where they will continue to have ongoing breast cancer surveillance under the care of a breast surgeon.
An early success has been the alteration of the national cancer screening guidelines, which lowers the age of screening commencement from 50 to 30 years and provides direction as to better screening tests for use in these women.
The plan is to establish a state-wide multi-centre NF1 Breast Screening program where women with NF1 are linked into high-risk breast clinics throughout NSW, where they will receive appropriate, quality care through the NSW healthcare system.
This study is currently in the process of being expanded into two other tertiary centres within NSW and recruitment is ongoing.
To find out if we are eligible to be part of the study, Genomic Cause of Malignant Peripheral Nerve Sheath Tumours:
Who: Royal North Shore Hospital and the Garvan Institute
A collaboration between the Garvan Institute and RNSH helped establish a research project to examine the genomic cause of malignant peripheral sheath tumours in patients with Schwannomatosis. This project is currently underway with significant support from the Garvan Institute.
Patients have been identified and the project has been designed with the goal to have the Garvan laboratory perform the sequencing.