Thank you to those of you who contributed to the Burden of PFIC study over the last few months.
As part of the process of approving new treatments available on the NHS, further insight is needed into the experiences of partial external biliary diversion (PEBD). This is the drain that some children need to prevent a build-up of bile acids.
CLDF are calling on any families who have a child or teenager with a PEBD (or who has had a PEBD in the past) and also have a diagnosis of PFIC to see if they would be willing to take part in a 30 minute interview with a researcher from Acaster Lloyd Consulting Ltd – a research consultancy. During the interview you would be asked questions about how your child is able to cope with their PEBD and any problems that they experience. After that you will be asked to rate some descriptions of patients with liver disease. None of the questions would be intrusive and if there were any questions you didn’t want to answer then that’s fine. Parents will be offered a small payment as a thank you for your time.
We are aware that the process involved in being part of the earlier Burden of PFIC study was somewhat problematic. We can assure you that this will be easier to take part in.
The process is very simple if you would like to take part:
1. Email Harpreet Brrang (Information and Research Hub Manager) at firstname.lastname@example.org
2. We will send your email and your first name on to the contact at Acaster Lloyd Consulting
3. The company will be in touch via email to book a time for the discussion and answer any initial questions
4. They will also send you further information about what they hope to discuss as well as a copy of the questions if requested
If you have any queries please don’t hesitate to get in touch via Harpreet’s email above. There is a short turnaround for this so please get in touch as soon as possible.
We hope you choose to take part as it will allow us and others in this field to provide greater evidence when sharing your voice with stakeholders such as the NHS and The National Institute for Health and Care Excellence (NICE) .