Dialog Box

Children's Tumour Foundation of Australia

NF Health and Social Impact Assessment 2024

NF Health and Social Impact Assessment 2024


The Children’s Tumour Foundation is proud to be working towards delivering a Neurofibromatosis Health and Social Impact Assessment – the first of it’s kind in Australia.

The purpose of the assessment is to understand the experience of Australians living with or impacted by all types of NF, identifying gaps and priorities in healthcare, wellbeing, and social supports, while also providing an evidence base of lived experience by:

  • Gathering information on the impacts of NF on individuals, families and carers, health professionals and the broader community.
  • Giving you the opportunity to provide feedback on your experience of living with NF and accessing medical health care, treatment and supports.
  • Increasing awareness and understanding of NF in the community, by illustrating to government, policy makers and industry the impact of NF.

The report will aim to provide feasible and pragmatic recommendations that we hope will lead to better health outcomes for people with all types of NF, including NF2-related schwannomatosis (NF2) and all other types of schwannomatosis (SWN) in the years and decades ahead.

Help ensure your voice and experience is heard and accounted for in future advocacy and policy.

START SURVEY NOW Read Survey Participant Information Sheet 

Download the poster to share HERE.


Who can contribute?

Anyone impacted by NF can contribute to the study. This includes anyone 18 years or older in Australia living with:

  • Neurofibromatosis type 1 (NF1)
  • NF2-related schwannomatosis (NF2)
  • Schwannomatosis (SWN)

In addition to those with a lived experience of NF, we are also seeking input from:

  • Parents of children living with all forms of NF
  • Healthcare professionals with an interest/patient with NF (including specialists, researchers, clinicians and allied health professionals)
Why is your voice important?

As someone impacted by NF or supporting/treating someone with this condition, your input is critical to the success of this study. Your participation will help ensure we capture a wide-range of experiences from across a broad cross-section of the country.

We want to gather information from metropolitan, regional and rural centres in every state and territory – without these vital insights, it will be difficult for us to clearly articulate the gaps in care and need for services as they apply to you.

How long will the survey take?

The questions will take about 30 minutes to complete. If you are unable to complete the survey in one sitting, you can save your progress and return to the survey. 

What type of information will be collected?

The data analysis of this research will seek to meet the study objectives through an assessment of four key impact categories:

Direct impacts: what is the direct health system medical and non-healthcare costs due to NF diagnosis and management?

Indirect impacts: how does NF impact the productivity of people with NF and their families and care givers?

Individual health and wellbeing impacts: how does NF impact the daily function (including physical, social, emotional, and work impacts) of people with NF and their families and care givers? 

Health system impacts: what are the current state-based barriers to accessing medical care and treatment for NF? What needs to be improved to enable a better experience for people with NF and their families and caregivers?

Analysis of data across these four impact areas will be reported as key themes, across all survey and consultation responses.

What are the benefits of participating?

The survey provides you with an opportunity to have your voice and experience heard and accounted for in future advocacy and policy. This study will hope to build an evidence base around NF and its impacts. It will seek to raise awareness of the condition and the need for greater system support.

What are the risks of participating?

The survey includes questions about your experience with NF, including questions on diagnosis, care and management of NF, and the mental health and physical impacts you have experienced. We acknowledge that filling out the survey may cause distress for some people.

If you need support at any time, please contact our team at 02 9713 6111 or support@ctf.org.au

 Your participation in the survey is voluntary. 

You are free to choose not to answer any of the questions. You can stop participating in the survey at any time.

How will my data be stored and used?

Throughout the entirety of this project, all data will be housed on secure servers, where responses will be downloaded into an excel format without any identifying data. This data will only be accessible by the research team.

Your survey responses will be combined with those of other participants when being considered, and as such, will collectively inform the report. You will not be identified in any way in the report.

Given the privacy protections and anonymity, no one will know if you have participated and what you answered.

The assessment will be developed in collaboration with PricewaterhouseCoopers Consulting Services Australia (PwC) and sponsored by Alexion Pharmaceuticals Ltd. The Bellberry Human Research Ethics Committee has reviewed and approved this study in accordance with the National Statement on Ethical Conduct in Human Research (2023).