As part of the re-consenting process, the revised Participant Information Sheet (PIS) and Informed Consent Form (ICF) were sent to each and every participant at the beginning of April 2016. We were very grateful to receive the prompt and supportive response of nearly 2,000 participants of the UK-PBC Genetics Study, who signed and returned their ICFs within the first month!
For UK-PBC to remain successful, however, it is imperative that the revised ICF is brought to the attention of every single participant. For this reason:
- In Mid-June, participants who have not yet signed and returned the revised ICF will receive a reminder in the post. This reminder will also clarify briefly a number of frequently asked questions.
- In Mid-July, participants who have not responded to either mailshot will be contacted by their UK-PBC collaborating centre. UK-PBC will gladly assist the collaborators in the process.
Keeping the participants informed is a priority for UK-PBC. Therefore, we would like to encourage all participants to contact the UK-PBC team for any queries, especially regarding the re-consenting process. If you have any questions, please contact Nikki Varvaropoulou (nv280@medschl.cam.ac.uk/ 01223 746771).
