The UK PID and secondary antibody deficiency registry
The UK PID and secondary antibody deficiency registry2023-10-09T11:27:40+00:00
The UK Primary Immunodeficiency Registry (UKPID Registry) is an on-line 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.
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.
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.
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