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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Other diseases of upper respiratory tract
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The National Primary ciliary dyskinesia (PCD) Registry is a database of information about the health and treatment of those with PCD in the UK. The information is held on a secure and confidential computer database and is paid for by the National Health Service England (NHSE) with support from PCD Support UK.
PCD is a complicated,life-long condition that affects a small number of people and,as such,there is limited evidence on how to manage the different aspects of care for patients it. By bringing together and analysing information on as many people as possible with PCD,we will understand the number of people with PCD in the UK,the state of their health and how they are treated. By taking regular,repeated data measurements over a prolonged period of time (longitudinal monitoring),it will allow for a better understanding of the clinical care of patients and its impact on their health outcomes. We hope that this better understanding of benefit of therapeutic and management strategies could then be used to inform the basis of subsequent,much needed,clinical trials in PCD.
Further to this,we are now starting to see and undertake clinical trials using novel genetic (mRNA) therapies that,we hope,will fix the underlying genetic causes for our patients having PCD,thereby curing them of the condition. Having an up-to-date National Registry,with complete genetic data for all our patients,will be fundamental to allow us to be able to identify patients with specific gene involvement quickly. This will encourage pharmaceutical companies working in this area to come to the UK first when they develop such treatments,thereby allowing our patients early access to these exciting new treatments.
A specific research project,already planned with the data from the PCD Registry,is to consider the impact that the variation in the underlying reason for a patient having PCD (the specific genetic or structural cause of this) has on clinically important health outcome measures,such as lung function and growth. This may allow treatments and resources to be better personalised to an individual patients’ needs.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cross-sectional;
You can take part if:
You may not be able to take part if:
Patients who do not meet the diagnostic criteria outlined above,even if they are felt to ‘probably’ have PCD will not be included in the Registry initially. The clinical teams will be encouraged to undertake further testing to confirm the diagnosis in these cases. This will be reviewed episodically.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST and funded by Primary Ciliary Dyskinesia Support UK .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 59759
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