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.
For More Information
Please contact Karen Cockburn info@nervetumours.org.uk. This study is being run by Costello Medical, an independent research consultancy.
Filter News
Wass’ Everyday Battlers 10K Stratford Run
Wassim is running the 10K Stratford Run for Nerve Tumours UK. Here he explains his reasons as to why:
Read More
Megan’s Skyfall
Megan is undertaking a sponsored skydive for NTUK as part of her travels! Find out more here
Read More
Glen’s Half Marathon in Support of his Nephew Freddie.
Have a read about the special young boy who has inspired his uncle take on the New Forest Half Marathon
Read More
Jessica’s Amazing Fundraising Efforts
Have a read about the incredible 7 year old fundraising girl who is supporting research into NF1
Read More
Smiling Through
Have a read about Melanie and her courageous young son Emilio (NF1) and the impact NTUK has had on their lives.
Read More
Our 2019 Christmas Card Competition Winner!
See our Christmas Card winning illustration here
Read More
Helen’s Story
Have a read of loving Mum Helen's Story and how she cares for her wonderful daughter Gaby (NF1)
Read More
Looks and Life: A summary of the study
Have a read about the findings from the UWE's "Looks and Life" Study
Read More
Kate’s Story
Have a read of Kate's inspiring story including the introduction of her beautiful daughter Esme, who has NF1, into the world.
Read More