The United Kingdom Primary Immune Deficiency (UKPID) Registry 2012 to 2017

Research output: Contribution to journalArticle

  • External authors:
  • Ben Shillitoe
  • Catherine Bangs
  • David Guzman
  • Andrew R Gennery
  • HJ Longhurst
  • Mary Slatter
  • David Edgar
  • Moira Thomas
  • Austen Worth
  • A Huissoon
  • S. Jolles
  • Helen Bourne
  • Hana Alachkar
  • Sinisa Savic
  • Dinakantha S. Kumararatne
  • S Patel
  • Helen Baxendale
  • S. Noorani
  • Patrick FK Yong
  • C Waruiru
  • V. Pavaladurai
  • P. Kelleher
  • R. Herriot
  • Jolanta Bernatonienne
  • Malini V. Bhole
  • C Steele
  • G Hayman
  • A. Richter
  • Mark Gompels
  • S. Paulus
  • Charu Chopra
  • Tomaz Garcez
  • M. Buckland

Abstract

This is the second report of the United Kingdom Primary Immunodeficiency (UKPID) registry. The registry will be a decade old in 2018 and, as of August 2017, had recruited 4758 patients encompassing 97% of immunology centres within the UK. This represents a doubling of recruitment into the registry since we reported on 2229 patients included in our first report of 2013. Minimum PID prevalence in the UK is currently 5.90/100,000 and an average incidence of PID between 1980 and 2000 of 7.6 cases per 100,000 UK live births. Data are presented on the frequency of diseases recorded, disease prevalence, diagnostic delay and treatment modality including haematopoietic stem cell transplantation (HSCT) and gene therapy. The registry provides valuable information to clinicians, researchers, service commissioners and industry alike on PID within the UK, which may not otherwise be available without the existence of a well-established registry.

Bibliographical metadata

Original languageEnglish
JournalClinical and experimental immunology
Volume192
Issue number3
Early online date25 May 2018
DOIs
Publication statusPublished - Jun 2018