NF1 with Plexiform Neurofibromas Study: information for patients and carers
28 January 2021
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
Filter News

Nigel’s story - Normal is as normal does
Nigel lived a normal life until age 47. The next 20 years took him from NF1 to NF2 to Schwannomatosis to mosaic NF2
Read More
Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read More
Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read More
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read More
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More_800_600_s_c1.png)
Oliver Bromley’s NF Story
Oliver Bromley, with NF1, was asked to leave a restaurant due to his appearance, sparking a call for greater awareness and ed
Read More
NF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read More
University of Manchester Research
Read about the latest PHD research, involving Nerve Tumours UK, at the University of Manchester
Read More
New Research Study for Children and Young People with NF1
Find out more about the study and how you can participate here
Read More