NF1 PN Impact on Patients’ and Caregivers’ Lives

23 March 2021

Do you have NF1 with plexiform neurofibromas (NF1 PN)? Are you a parent of someone with NF1 PN? Do you care for someone with NF1 PN? If yes to any of the questions, please share your views by completing an anonymous survey, which will help healthcare decision-makers better understand the challenges people with NF1 PN and their caregivers face.

Why Is This Survey Important?

The anonymous results will give healthcare decision-makers a better understanding of the challenges people with NF1 PN and their caregivers face in their daily lives. This information can be used to understand the benefit of potential new treatments and to help determine if certain NF1 PN treatments should be funded by the National Health Service (NHS). We hope that the study results will be presented at academic conferences and published in peer-reviewed medical journals so that the NF1 community can learn from these findings, and other patients with NF1 PN can potentially benefit from your experiences being shared.

Who Can Take Part?

In order to complete the survey, participants must be able to speak English and be based in the UK with access to the internet on a laptop or desktop computer. Children and teenagers under 16 years of age and any young person, over 16, who is not capable of giving consent should complete the questionnaire with the consent and in the presence of their parent or guardian.

What Would We Ask You to Do?

We would like to invite you to complete an anonymous survey about your physical and mental wellbeing, and/or the physical and mental wellbeing of the person you care for.