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

Nicole’s NF1 story & skydive
Nicole shares her NF1 journey and her motivation to inspire children with disabilities to achieve whatever they want to do
Read More
Sarah’s NF1 story & Langmead fundraising
Sarah describes her daughter Hannah's NF1 journey and organising a corporate charity day fundraiser at Langmead Herbs
Read More
Molly & Alfie
Mollie has NF1 - her big brother Alfie & friend Kaelan are running to raise awareness & funds for NTUK
Read More
Study - Resilient Youth with NF
Adolescents with NF (12-17 years old) are wanted for an Online Harvard research project
Read More
Jamie’s NF1 story
Jamie was inspired by reading NTUK stories and is now using his own experiences to help raise awareness of Neurofibromatosis
Read More
CAR Relationships study
CAR survey: support materials for adults with appearance-affecting conditions, focussed on intimacy & romantic relationships
Read More
Glasgow Comedy Night
Last night was the turn of Glasgow's The Stand Comedy Club to host the NTUK Comedy Circuit 2022
Read More
Newcastle Comedy Night
The Stand Comedy Club in Newcastle held a great night of fun and laughter
Read More
Nerve Tumours UK Lottery
Read how the NTUK Lottery helps make a difference to the NF Community
Read More