The UKPID Registry : Update 2015
Bangs C1,2, Farrell S1,2, Edgar D1,3 , Guzman D1,4, Buckland M1,5
On behalf of the UKPID Registry Committee, UKPIN, 2Immunology, Manchester Royal Infirmary,
Manchester, UK, 3Immunology, The Royal Hospitals, Belfast, N Ireland, 4Department of Immunology,
UCL Medical School, Royal Free campus, London 5Immunology, Barts Health NHS Trust, London
registry. ItIt provides
provides aa secure
as aa valuable
further 22 centres
comprises 33 datasets.
Level 22 :: details
have aa fixed
of aa potential
level 33 project
level 33 project
with aa majority
65% (( 2208)
shows aa gradual
Fig 2: Percentage of patients on subcutaneous
immunoglobulin by year
The data shown below is for the Predominantly Antibody Group. 37% (809) have bronchiectasis, 4% (78) granulomatous disease, 6%
(124) interstitial pulmonary disease and 8% (185) a neoplasm. Figure 4 shows the incidence of autoimmune conditions in this group
(excluding secondary hypogammaglobulinemia). The total with some form of autoimmunity is 568 (26%). 1193 (54%) have CVID and the
numbers for the other conditions are shown in Figure 3.
Fig 3: Number of patients in the
Predominantly Antibody Deficiency group
Fig 4: Number of patients in the Predominantly Antibody group with
autoimmune conditions (excluding secondary HGG)
Discussion:. Following the transfer of level 1 data to the new design registry on the 1st October this year, the diagnosis of all entries
must be validated against the ESID diagnostic criteria. All Principal Investigators (PIs) have been notified and it is intended that the
validation process will be completed in the next year. Although this process is time consuming, there are real benefits in having a more
robust dataset available for statistics and research and we hope all PIs will fully engage in the validation process.
With thanks to contributing centres :
Herriot R: Aberdeen, Longhurst H: The Royal London, Edgar D: Belfast, Huissoon A: Birmingham Heartlands, Noorani S: Birmingham City, Richter A:Queen
Elizabeth Hospital Birmingham, Bernatoniene J: University Hospitals Bristol, Kelleher W, P: Brompton, Kumararatne D: Addenbrookes, Baxendale H: Papworth,
Jolles S: Cardiff, Bhole M: Dudley, Marshall S: Dundee, Turner M: Edinburgh, Hayman G: Epsom & St Helier, Yong P: Frimley Park, Thomas M: Glasgow,
Davies G: GOSH, Gordins P: Hull, Wood P: Leeds, Darroch J: Liverpool, Paulus S: Alderhey, Arkwright P: Manchester, Slatter M: Newcastle paediatrics,
Spickett G: Newcastle adults, Goddard S: North Midlands, McDermott L: Nottingham, Patel S: Oxford, Bethune C: Plymouth, Grimbacher B: Royal Free,
Alachkar H: Salford, Sargur R: Sheffield, Waruiru C: Sheffield Childrens, Williams A: Southampton, Heath P: St Georges,.
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