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Models of care
A Models of Care project is currently underway, exploring solutions aimed at improving equitable access to best practice clinical care.
Background:
The 2024 NF Health and Social Impact Assessment report highlighted significant disparities in neurofibromatosis (NF) care and a widespread lack of clinician knowledge of the condition, both in metropolitan and regional areas. A Model of Care Workshop followed, bringing together clinicians and healthcare professionals to discuss current models of care, issues within these models and ways the quality and consistency of care could be improved.
The workshop highlighted that across Australia, NF care faces significant challenges related to geographic disparities, insufficient funding, gaps in specialised knowledge and expertise, and insufficient support during the transition from paediatric to adult care. The workshop identified that addressing these issues requires the development of national coordinated care model for NF. A project to deliver this work commenced in 2025.
An overview of the project:
The project will define, develop and deliver a national guideline for care (for children with NF1).
It will involve a systematic review of national and international literature to define best practice and pull the evidence together in an Australian format. A steering committee has been established, and an external consultancy has been engaged as the Project Manager.
The key objective is to establish national guidelines outlining optimal, multidisciplinary and person-centered care.
The steering committee:
A/Prof Jonathan Payne DPsych
Chair of the Medical Advisory Panel | Co-Group Leader, Brain and Mind, Murdoch Children’s Research Institute
Dr Gabriel Dabscheck
Member of the CTF Medical Advisory Panel | Director of the Neurofibromatosis clinic at Royal Children's Hospital, Melbourne
A/Prof Mimi Berman
Member of the CTF Medical Advisory Panel | Head, Department of Clinical Genetics, Royal North Shore Hospital
Veronica McCabe PhD
Member of the CTF Board | Founder and principal of Research Collective
Community collaboration:
The Children's Tumour Foundation is facilitating this work, and will ensure members from the NF community have their chance to participate in the questionnaire process, sharing their lived experience, realities navigating the health care system, and vision for minimum clinical care standards.
A note to adults with NF1 + our Schwannomatosis and NF2 community:
Whilst this work initially focuses on clinical care guidelines for children with NF1, it will also outline a recommended approach for transitioning to adult services. Quality care shouldn't end when childhood does, and we are determined to see improvement in adult care.
Those living with the rarest forms of NF also deserve equitable access to care. Where the gaps prevail, so do the opportunities and we will continue working alongside passionate changemaker to drive advances in care.
Acknowledgments:
The funding for this project has been provided by the Children's Tumour Foundation (thanks to donations raised from the former Steps Towards a Cure fundraiser), as well as a sizeable donation from Alexion Pharmaceuticals.
We are also grateful for the steering committee members, offering their time and expertise to improve care.
Lastly, we acknowledge the NF community, for your patience, persistence and participation, which will make progress in this space possible.
Questions:
If you have any questions about the project, please contact the CTF support team on (02) 9713 6111 or email support@ctf.org.au