Researchers from Royal North Shore Hospital and the Kolling Institute will lead Australia’s first study of whole-body screening for young people with neurofibromatosis type 1.
Led by Dr Sue-Faye Siow from the department of clinical genetics, the study was awarded a grant through the RNSH Campus Research Grants Scheme, and an additional $30,000 in support from the NORTH Foundation.
Neurofibromatosis type 1 (NF1) is an inherited condition that affects 1 in 2,500 people.
Young adults with the condition face a 20-fold increase in cancer-related mortality, yet there are currently no routine imaging guidelines in Australia.
The study will recruit 50 patients aged 18-40 years old to assess the feasibility and psychosocial impacts of the whole-body MRI screening program.
Dr Siow said their project could be life-changing.
“This is the first study of whole-body MRI screening of people with neurofibromatosis type 1 in Australia,” she said.
“We have the opportunity for early detection in this group of young people who have a high cancer risk.”
The research will be conducted through the Royal North Shore Neurofibromatosis Clinic, a statewide service led by Associate Professor Mimi Berman, in collaboration with national partner Omico.
The project aims to inform national guidelines and significantly improve outcomes through earlier detection and treatment of cancer.
The Royal North Shore Campus Research Grants scheme funds exceptional research to improve standards of care and health outcomes locally and regionally.
Applications for the 2025 grants are now open, offering grants of up to $150,000.
Researchers interested in the opportunity can email nslhd-researchgrants@health.nsw.gov.au