The UK Primary Immunodeficiency Registry (UKPID Registry) is an online registry of primary immune deficiency and secondary antibody deficiency patients in the UK.  Its aim is to provide a comprehensive picture of these conditions in the UK. With patient consent, their data is entered into a secure database.

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.

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

The more patient data we have the more representative this is of all UK patients with primary immunodeficiency and secondary antibody deficiency.  Already we are beginning to get useful data to help guide how best to diagnose and manage these conditions.

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.

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.

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.

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.

Consent must be freely given and can be withdrawn at any time, when your record would be deleted from the registry.

Posted August 2024.