Understand the experience of adults living with Neurofibromatosis Type I with Plexiform Neurofibromas (NF1 PN)

This research has now closed

Sequentis Health is interested in the adult experience of living with NF1 PN (Neurofibromatosis Type I with Plexiform Neurofibromas), as well as the experience of transitioning from paediatric care of NF1 PN to adult care.

Sequentis Health is an independent healthcare market research agency. We are conducting a research study on behalf of a pharmaceutical company.

• The aim of this research is to understand the reality of the NF1 PN journey from diagnosis to daily life, and the emotional impact that has.
• We would also like to understand the care an individual patient receives (e.g. from Doctors) and how, if at all, this affects their experience with the condition.

• People who are over 18 years old and are diagnosed with NF1 PN.
• Caregivers of people who are over 18 years old and diagnosed with NF1 PN.

• As part of this research, we would like to invite you to take part in a 1 hour in-depth interview, conducted virtually using Zoom.
• We want to get a range of perspectives about this topic, which is why we’re asking for adults living with NF1, their caregivers and healthcare specialists to offer their insights.
• You do not need to appear on camera for this interview.
• Beforehand, we will ask you to attend a screening call where we can explain the process in more detail. Your participation will be subject to local compliance and data privacy rules. You will be free to opt out from participating at any time, even during the interview.

As a thank you for your time, you will be offered compensation for your involvement.

If you wish to participate in the study or have any questions, please get in touch with the Sequentis Health recruiters: steven@adeptfield.com

Nerve Tumours UK is not responsible for any data collection or content of the research.