Living with PCD Meeting

Fiona Copeland was invited to attend the Living with PCD In person meeting in Bern, Switzerland. The project Living with PCD (formerly COVID-PCD) is a research study that aims to answer emerging questions about primary ciliary dyskinesia (PCD). Persons with confirmed or suspected PCD from anywhere in the world can participate. Participants receive a detailed questionnaire when they start the study. Extra questionnaires on special topics are sent from time to time.

It was the first time that patient partners and the research team had the opportunity to meet face to face.  Over two productive days in Bern, Fiona had the privilege of joining other patient representatives from across Europe, with additional participants joining online from Spain and Australia. Together, we spent time sharing experiences, identifying gaps, and shaping practical tools that will support people with Primary Ciliary Dyskinesia (PCD) who are considering taking part in research.

During the workshop, we began developing a roadmap to make research involvement clearer, more accessible, and more empowering for families. As a group, we agreed on two key next steps:

• A practical checklist for people with PCD and their families who are thinking about participating in research.

• A companion checklist for researchers who want to meaningfully involve people with PCD and their families in their studies.

These resources will help everyone understand what to expect, what questions to ask, and what information to clarify before joining this and other PCD research projects. Our aim is to make participation safer, more informed, and more collaborative.

We also had the opportunity to be interviewed on why patient participation in research is vital. Will share with you the video in due course!