Recognizing and Reacting to PID
On its 10th anniversary, the UK Primary Immunodeficiency (UKPID) registry aims to raise awareness and improve care
Tayiba Sulaiman |
Where can you find almost 10 years’ worth of data collection on primary immune deficiency (PID), representing 97 percent of immunology centers across the UK and nearly 4,800 patients? Answer: the UK Primary Immunodeficiency (UKPID) registry’s second report on the rare syndrome (1). The new report includes data from more than twice as many cases as their first publication in 2014 (2). “It was more than four years since our last report,” says Matthew Buckland from the University College London’s Centre for Immunodeficiency. “In that time, there has been a change of platform, re-validation of original data, and improved diagnostic criteria applied. With a significant increase in patient numbers approaching UK prevalence, we felt it was time to re-analyze the data.”
PID affects only one in 16,000–50,000 people, and with more than 300 types of PID (3) – some of which have been diagnosed in fewer than 10 patients – the condition can be difficult to spot. Consequently, patients often experience significant delays in having symptoms recognized and receiving the correct treatment.
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