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Health concerns of individuals with Neurofibromatosis Type 1

Participate in research into Neurofibromatosis Type 1

You are invited to take part in this research study as part of the control group.

This study will evaluate cancer worry, anxiety and quality of life related to skin conditions prevalent in individuals with Neurofibromatosis Type 1 (NF1) and compare these to individuals without NF1 (controls). 

To participate in the study, you will be invited to complete a brief online survey about your concerns and how you would rate your quality of life, any cancer worry and anxiety that you may have.

A participant information sheet is included in the survey, for you to read prior to answering any questions.

This questionnaire has questions about cancer worry, anxiety and quality of life and will take 15 to 20 minutes to complete.

Participation in the study is entirely voluntary and if you do not wish to complete a questionnaire it will have no effect on your relationship with the research team. 

If you complete all or part of the questionnaire prior to exiting, we will assume your consent for the use of your data. It will not be possible to withdraw your information as we will not be able to identify which survey is yours.

Eligibility

You may be eligible to participate in this study if you:

  • Are 18 years or older
  • Do not have Neurofibromatosis Type 1

How to participate

If you are interested in assisting with this important and exciting area of research, please complete this online questionnaire.

If you require more information about the study, please email Dr Jane Fleming at jane.fleming11@health.nsw.gov.au or call 02 94631727.