NF1 with Plexiform Neurofibromas Study: information for patients and carers

Do you have Neurofibromatosis Type 1 (NF-1) with plexiform neurofibromas (PN) or do you care for a child with NF-1 and PN?  If so, we would like to speak to you for our research study, which aims to better understand how patients and carers experience living with NF-1 and PN and how this impacts their daily lives.

What would we ask you to do?

The research team will first ask you a few short questions to confirm you are eligible for the study over email.  If you are eligible, you will be invited to take part in a telephone interview lasting around one hour.  Participants will speak with a researcher from Acaster Lloyd Consulting Ltd., an independent research consultancy. 

You will receive £30 via a bank transfer for taking part in the study.   

What would we do with your data?

Interviews will be audio-recorded and transcribed verbatim.  All transcripts will be anonymised so that the identity of study participants will not be revealed in any reports.  Data from all study participants will be combined and analysed together.  The objective of the study is to understand how NF-1 with PN impacts patients’ and carers’ lives.

The anonymised study results will be used to help inform those who make decisions about whether treatments will be made available to the NHS (i.e. NICE in the UK). We anticipate that the study results will be presented at academic conferences and published in peer-reviewed medical journals.

Are you interested in taking part in the study?

If you are interested in taking part or have questions about the research, you can contact us by emailing: claire.lawrence@acasterlloyd.com