NIHR Patient Engagement in Clinical Development Service – Insight Session – Haemophilia in Children

NIHR Patient Engagement in Clinical Development Service: Are you interested in helping to improve health and care research? Then this is your opportunity to help shape the design of a clinical trial for Haemophilia in Children!

Who is the NIHR looking for?
This opportunity is for 8 adults (aged 18 or over) who:
– Live in the UK
– Have lived experience, as a family member or carer, of a child (aged 1-12) with Haemophilia
– Can access and use an online video calling platform such as Zoom
– Are happy to discuss their lived experience in a group.

What do I have to do?
If you are interested in taking part, please complete the application form linked below. If you are successfully selected for the session, we will invite you and the other public contributors to take part in an online group meeting which will last for 2 ½ hours. The session will involve:
– Hearing about the impact the health condition has on your life
– The company talking to you about their planned research
– Sharing your thoughts and feedback on the planned research

When will the meeting take place?
A date has not yet been set for this activity, but it is likely to take place in early January.

Will I get paid?
The NIHR, on behalf of the company they are working with, will provide you with the opportunity to claim for an involvement payment of £67.50 for your participation. This will be paid by bank transfer, usually 6 weeks after the activity has taken place (although it can occasionally take a little longer). You can find information about payment for research involvement activities, and the impact this may have on your tax and national insurance here.

What happens after the session?
The NIHR PECD team will write an anonymised report for the company, summarising the session’s discussions. The company will use this report to review their plans and make changes to their study based on the group’s feedback. A few months after the activity, the PECD team will send an update from the company to all contributors detailing how the insights were used to improve the study’s design.

How do I apply or find out more information?
If you would like to take part in this opportunity, please complete this application form: https://forms.office.com/e/uh78h47a4y
If you have any questions about the PECD Service or the planned activity, or have any difficulties completing the application form, please contact the NIHR PECD Service Coordinator by emailing pecd@leeds.ac.uk

Deadline for applications: 16th December 2024