This page provides an overview of the National Primary Ciliary Dyskinesia Registry. The National PCD Registry is a database of information about the health and treatment of adults and children with PCD in the UK.
A representative of PCD Support UK sits on the National Registry Research and Steering Committee, and PCD Support UK have provided financial support for this registry.
The National PCD Registry is a database of information about the health and treatment of adults and children 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 condition that affects a small number of people. By bringing together and looking at information on as many people as possible with PCD, we can better understand PCD and how different treatments may help you/your child keep healthy. Doctors can learn from this information and provide better care for people with PCD in the future.
No, it is up to you whether you decide to take part in the PCD Registry. If you decide to take part, you will be asked to sign a consent form. You/your child’s care will not be affected in any way if you decide not to take part.
The information kept in the PCD Registry is similar to the information that is taken during you/your child’s usual clinic visits. These include height, weight, lung function tests, sputum/cough swab results, imaging results and any other tests carried out at the hospital.
The PCD Registry will hold information about the treatments given to you/your child, along with details of any other medical issues that they may have. In addition, the PCD Registry will record details of you/your child’s PCD diagnostic testing, including the genetic cause for them having PCD (called their “genotype”) if this is known. (see our Genetics page for more information on PCD genetics).
Yes, if you agree for you/your child to take part and decide later that you no longer want to be involved, you will be able to withdraw from the PCD Registry at any time without giving a reason. You/your child’s care will not be affected in any way if you change your mind and withdraw from the National PCD Registry.
Information written in your/your child’s medical notes will be entered into the PCD Registry. This information will be used to follow you/your child’s progress as well as getting an overall picture of everyone with PCD at your PCD Centre.
The information from all the PCD Centres will help us understand of the number of people with PCD in the country, how healthy they are, and their treatments. The PCD Registry will help us to see if there are differences between the health of people in different Centres and within different regions of the country. We can then use this information to understand the reasons for any differences and use this to make improvements to the care of people with PCD.
Information from the PCD Registry may also be used for planning future services for people with PCD in the country. The PCD Registry will be used to identify trends that may not be obvious in one centre, for example, if new infections are emerging, and to help identify groups of patients who could take part in research studies and clinical trials. All of these will contribute to improving care for people with PCD in the future.
The PCD Registry will produce an annual report each year that summarises this information and which will be available on the PCD Support UK website (see below).
As PCD is rare, it is important that we collect the clinical information for as many PCD patients as possible. Therefore, with your specific consent, we will also share some of your/your child’s anonymised (non-identifying) clinical data with other International PCD Registries. This will allow us to compare the health of people with PCD in this country to those in other countries. This will help provide information from even more people with PCD and give us a greater understanding of PCD, how it affects you/your child, and how to treat it better.
All the information in the PCD Registry is held confidentially and we will keep their information safe and secure. The PCD Registry is compliant with Data Protection legislation and has Research Ethics Committee approval. It is managed in accordance with relevant laws and ethical guidelines here in the UK.
In addition, each PCD centre will generate a unique Patient Identification Number (PIN) for you/your child and this, not their names, will be used to record their information within the database. We will need to record your child’s date of birth (in order to calculate their growth and lung function centiles), their ethnicity and the first part only of their postcode, in order to best inform efforts to improve our clinical service. Your/your child’s stored information will therefore be what’s termed ‘pseudonymised data’ where personally identifiable information will be limited and, where possible, replaced by an artificial identifier.
The use of any information from the PCD Registry will require the approval of the PCD Registry Steering and Research Committee comprising Specialist PCD clinicians and representatives from PCD Support UK, including a patient and/or parent. In addition, any shared data will be given a separate independent PIN to that used within the Registry, to further anonymise this data.
If you have any questions or require any further information please talk to your PCD team.
Data Request
If you would like to request data from the registry for your research, please fill out the following form and send it to [email protected]:
Please click on the links below to download the .pdf reports. These reports are not written for the lay-person, and contains specialist language. If you would like us to provide lay-friendly versions of these, please let us know by emailing [email protected].