Living with NF1: psychological impact & experiences

This research is now closed

Would you like to participate in research?

OPEN Health are conducting research to understand the experiences of people living with Neurofibromatosis Type I (NF-1) as well as their caregivers and their healthcare teams. If you or one of your loved ones or patients has NF1, we would like to hear from you.

They are particularly looking for young people with NF1, aged 7-16 years.

The aim of this research is to understand the reality of the NF1 journey from diagnosis to daily life, and the emotional impact that has. We would also like to get an accurate view of the effect that different forms of NF1 can have on someone’s experience with the condition.

As part of this research, we would like to invite you to take part in a 1-hour in-depth interview, conducted virtually using Microsoft Teams. We want to get a range of perspectives about this topic, which is why we’re asking for people living with NF-1, their caregivers and healthcare specialists to offer their insights.

The interviews are scheduled to take place in January or February, depending on the availability of those who would like to take part. 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.

Deadline for recruitment 31st January 2023

For more information please contact OPEN Health research: 

Research@OPENHealthGroup.com

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