Cystic Fibrosis Liver Disease (CFLD); predicting and prescribing in the era of CFTR modulators; a HRB/CFI funded project
Are you interested in helping to develop our understanding of CF Liver Disease? Do you think you can use your experience and expertise as a person (or a parent of a child) with CF to strengthen and support the project? Your voice and opinions matter and if you would like to be a member of the PPI panel for this HRB/CFI funded project, we would love to hear from you.
Project Aims:
• Develop a model which identifies those at risk of liver disease (CFLD) in Cystic Fibrosis
• Understand the role of CFTR modulator therapy in the prevention and management of CFLD
Purpose of PPI Panel
1. To use a patient / public partnership to help develop a pathway for the early recognition of CF Liver Disease in people with CF which meets the needs of the CF community.
2. To work with people with CF (with and without liver disease) on modulators to best determine the approach to assess the effect of the modulators on the development and progression of liver disease.
3. To develop understandable and useful material to communicate the findings of this study to the CF community and to the public.
Meet the Team
Project Lead: Emer Fitzpatrick
Project Researcher(s): Emma O’Brien (Research Nurse)
Project Advisors and Consultants: Sarah Tecklenborg (CEO, CFI), Godfrey Fletcher (CEO, CFRI)
Project Management Support: Amy Lester-Grant
Expert(s) by experience: We hope our team will be joined by people with CF (with or without liver disease) or parents of children with CF
If I choose to join the team as a PPI member, what are some of the things I can expect to do?
● Attend scheduled team meetings.
● Read any information that is shared before the meeting (agree when information is circulated so that everyone has enough time to read it).
● Agree of on a format for information that is accessible and understandable for all team members.
● Comment on documents
● Share your ideas and views freely and actively.
● Suggest issues for consideration at meetings.
Communication
Meetings will be on-line and every 6 months for a period of 2 years. Email between meetings will be used to communicate any more urgent issues.
Confidentiality
Some discussions or papers circulated for meetings may be considered as confidential. If unclear, please seek clarification from the project lead. By becoming a collaborator on this project you agree to uphold this confidentiality.
Time Commitment
Meetings will take place 6 monthly as above and be of 1 hour duration in most cases. Some preparatory work (30 – 60 mins) per meeting is likely to be required. The group will convene over the duration of the project (24 months).
Contact Dr Emer Fitzpatrick (emer.fitzpatrick@ucd.ie) for further information
