The UK PID registry

The UK Primary Immunodeficiency Registry (UKPID Registry) is an on-line registry of primary immune deficiency patients in the UK.  Its aim is to provide a comprehensive picture of PIDs in the UK. With patient consent, their data is entered into a secure database. 

Here we answer frequently asked questions about taking part in the registry:

Q. How do I know if I am on the registry and who should I ask about this?

A. To be involved you will have signed informed consent and given a patient information leaflet.  If you can’t remember then you can ask your clinical team.

Q. If I’m not how do I join?

A. All the UK centres are now involved, so ask your nurse or doctor at your next appointment.

Q.What are the benefits of joining?

A. The more patient data we have the more representative this is of all UK patients with PID.  Already we are beginning to get useful data to help guide how best to diagnose and manage PID.

Q. What should I expect?

A. There are questions annually that you may be asked to fill in on a questionnaire, but most of the data is taken from your clinical record.

Q. What happens to my data and where and how is it stored?

A. It is stored on secure servers in London in an anonymised form and twice a year uploaded to the ESID registry unless you opt out of this.

Q. Can I access my data?

A. Aggregate data rather than personalised data is accessible by individual centres.  The information is the clinical diagnostic information that you have provided your doctor with e.g. if you are well, how many infections you have had, what your antibody level or T-cell level is for example.

Q. How is my data used? 

A. It is used to help us understand how people are living with PID, what problems arise and if there is variation in treatment, access to treatment or people who do better or worse under specific conditions.  This data is presented in aggregate (non-patient identifiable) form in meetings and in published work.

Q. Can I withdraw my data from the registry at any point? 

A. Consent must be freely given and can be withdrawn at any time, when your record would be deleted from the registry.

Find the latest news about the registry here and the work of UK PIN here.

Posted May 2015