You can also help PCD research by volunteering to be a patient or public representative. This is an important role that will help ensure research is patient-centred and that patients and the public are involved in the design of research studies. Representatives will be able to offer a unique perspective and have a personal understanding that doctors, nurses, and researchers may lack. If this is something you feel you may be able to help with, please complete the PCD Patient and Public Involvement Registration Form and email it to [email protected].
Frequently asked questions about research
All research participation is voluntary and may be withdrawn at any time. Each study will have its own requirements. It is important you read the patient information sheet and ask any questions you may have before deciding whether you/your child wants to take part. You may wish to consider:
Number of visits
Treatment changes
Time it will take you
Tests you will be required to undertake
If you are happy to get involved in a research study, you will need to give informed consent to show that you understand what is being asked of you and to confirm you agree to take part. You should not give your consent if you are unclear about any aspect of the research. Not all research requires in-person participation. Some research studies such as the COVID-PCD study (see section “Advertisements for Research”) can be done remotely and do not require you to visit the hospital to participate.
If you take part in a research study, you may have more contact with your PCD team which may improve your understanding of your condition and its management. In many cases, the research may not help you directly, but it may provide vital information that will help people with PCD in the future. The aims of the study will be explained to you before you give your consent.
To eliminate any risks to patients, all research must be approved by a Research Ethics Committee – a panel of health and social care professionals and members of the public with knowledge of, and/or an interest in research. Each study will be different, and any known risks will be explained clearly to you.
Each study will have a patient information sheet with a named person for you to contact with any concerns. You can also contact your local Patient Advice and Liaison Service (PALS) with any concerns you may have.
The PCD National Service works together within the UK but also collaborates internationally as part of BEAT-PCD funded by the European Respiratory Society. A network coordinating research from basic science to clinical care for PCD.
The UK Cilia Network brings together research and clinicians working on structure and function of cilia.
For more information about ear, nose and throat management please look at the website for ENT UK
Simon Whalley and Chris McManus’ study into ‘Living with PCD’ published in October 2006
The UK Pub Med Central website aims to make medical articles freely available to researchers. If you follow the link and enter “Primary Ciliary Dyskinesia” into the “search article” box it finds around 67 articles on the subject which can be viewed, downloaded etc.
