The United Kingdom Primary Immune Deficiency (UKPID) Registry: Report of the first 4 years' activity 2008-2012

J. D.M. Edgar; M. Buckland; D. Guzman; N. P. Conlon; V. Knerr; C. Bangs; V. Reiser; Z. Panahloo; S. Workman; M. Slatter; A. R. Gennery; E. G. Davies; Z. Allwood; P. D. Arkwright; M. Helbert; H. J. Longhurst; S. Grigoriadou; L. A. Devlin; A. Huissoon; M. T. Krishna; S. Hackett; D. S. Kumararatne; A. M. Condliffe; H. Baxendale; K. Henderson; C. Bethune; C. Symons; P. Wood; K. Ford; S. Patel; R. Jain; S. Jolles; T. El-Shanawany; H. Alachkar; A. Herwadkar; R. Sargur; A. Shrimpton; G. Hayman; M. Abuzakouk; G. Spickett; C. J. Darroch; S. Paulus; S. E. Marshall; E. M. Mcdermott; P. T. Heath; R. Herriot; S. Noorani; M. Turner; S. Khan; B. Grimbacher

doi:10.1111/cei.12172

The United Kingdom Primary Immune Deficiency (UKPID) Registry: Report of the first 4 years' activity 2008-2012

J. D.M. Edgar^*
, M. Buckland
, D. Guzman
, N. P. Conlon
, V. Knerr
, C. Bangs
, V. Reiser
, Z. Panahloo
, S. Workman
, M. Slatter
, A. R. Gennery
, E. G. Davies
, Z. Allwood
, P. D. Arkwright
, M. Helbert
, H. J. Longhurst
, S. Grigoriadou
, L. A. Devlin
, A. Huissoon
, M. T. Krishna

S. Hackett, D. S. Kumararatne, A. M. Condliffe, H. Baxendale, K. Henderson, C. Bethune, C. Symons, P. Wood, K. Ford, S. Patel, R. Jain, S. Jolles, T. El-Shanawany, H. Alachkar, A. Herwadkar, R. Sargur, A. Shrimpton, G. Hayman, M. Abuzakouk, G. Spickett, C. J. Darroch, S. Paulus, S. E. Marshall, E. M. Mcdermott, P. T. Heath, R. Herriot, S. Noorani, M. Turner, S. Khan, B. Grimbacher

^*Corresponding author for this work

Royal Victoria Hospital Belfast
Queen's University Belfast
Royal London Hospital
University College London
Manchester Royal Infirmary
University of Freiburg
CSL Behring Ltd
Newcastle upon Tyne Hospitals NHS Foundation Trust
Great Ormond Street Hospital for Children NHS Foundation Trust
University Hospitals Birmingham NHS Foundation Trust
Cambridge University Hospitals NHS Foundation Trust
Royal Papworth Hospital NHS Foundation Trust
University Hospitals Plymouth NHS Trust
Leeds Teaching Hospitals NHS Trust
John Radcliffe Hospital
University Hospital of Wales
Northern Care Alliance NHS Group
Sheffield Teaching Hospitals NHS Foundation Trust
Epsom and St. Helier University Hospitals NHS Trust
Hull University Teaching Hospitals NHS Trust
Liverpool University Hospitals NHS Foundation Trust
Alder Hey Children's NHS Foundation Trust
University of Dundee
Nottingham University Hospitals NHS Trust
St. George's Hospital National Health Service Foundation Trust
NHS Grampian
Sandwell and West Birmingham Hospitals NHS Trust
Scottish National Blood Transfusion Service
Frimley Health NHS Foundation Trust

Research output: Contribution to journal › Article › peer-review

Abstract

This report summarizes the establishment of the first national online registry of primary immune deficency in the United Kingdom, the United Kingdom Primary Immunodeficiency (UKPID Registry). This UKPID Registry is based on the European Society for Immune Deficiency (ESID) registry platform, hosted on servers at the Royal Free site of University College, London. It is accessible to users through the website of the United Kingdom Primary Immunodeficiency Network (www.ukpin.org.uk). Twenty-seven centres in the United Kingdom are actively contributing data, with an additional nine centres completing their ethical and governance approvals to participate. This indicates that 36 of 38 (95%) of recognized centres in the United Kingdom have engaged with this project. To date, 2229 patients have been enrolled, with a notable increasing rate of recruitment in the past 12 months. Data are presented on the range of diagnoses recorded, estimated minimum disease prevalence, geographical distribution of patients across the United Kingdom, age at presentation, diagnostic delay, treatment modalities used and evidence of their monitoring and effectiveness.

Original language	English
Pages (from-to)	68-78
Number of pages	11
Journal	Clinical and Experimental Immunology
Volume	175
Issue number	1
DOIs	https://doi.org/10.1111/cei.12172
Publication status	Published - Jan 2014
Externally published	Yes

ASJC Scopus subject areas

General Medicine

Keywords

Human studies
Immunodeficiency-primary
Infections
Intravenous immunoglobulin therapy (IVIG)
Therapy/immunotherapy

Access to Document

10.1111/cei.12172

Cite this

Edgar, J. D. M., Buckland, M., Guzman, D., Conlon, N. P., Knerr, V., Bangs, C., Reiser, V., Panahloo, Z., Workman, S., Slatter, M., Gennery, A. R., Davies, E. G., Allwood, Z., Arkwright, P. D., Helbert, M., Longhurst, H. J., Grigoriadou, S., Devlin, L. A., Huissoon, A., ... Grimbacher, B. (2014). The United Kingdom Primary Immune Deficiency (UKPID) Registry: Report of the first 4 years' activity 2008-2012. Clinical and Experimental Immunology, 175(1), 68-78. https://doi.org/10.1111/cei.12172

@article{83a59a0422174033ab511788d85ac93f,

title = "The United Kingdom Primary Immune Deficiency (UKPID) Registry: Report of the first 4 years' activity 2008-2012",

abstract = "This report summarizes the establishment of the first national online registry of primary immune deficency in the United Kingdom, the United Kingdom Primary Immunodeficiency (UKPID Registry). This UKPID Registry is based on the European Society for Immune Deficiency (ESID) registry platform, hosted on servers at the Royal Free site of University College, London. It is accessible to users through the website of the United Kingdom Primary Immunodeficiency Network (www.ukpin.org.uk). Twenty-seven centres in the United Kingdom are actively contributing data, with an additional nine centres completing their ethical and governance approvals to participate. This indicates that 36 of 38 (95\%) of recognized centres in the United Kingdom have engaged with this project. To date, 2229 patients have been enrolled, with a notable increasing rate of recruitment in the past 12 months. Data are presented on the range of diagnoses recorded, estimated minimum disease prevalence, geographical distribution of patients across the United Kingdom, age at presentation, diagnostic delay, treatment modalities used and evidence of their monitoring and effectiveness.",

keywords = "Human studies, Immunodeficiency-primary, Infections, Intravenous immunoglobulin therapy (IVIG), Therapy/immunotherapy",

author = "Edgar, \{J. D.M.\} and M. Buckland and D. Guzman and Conlon, \{N. P.\} and V. Knerr and C. Bangs and V. Reiser and Z. Panahloo and S. Workman and M. Slatter and Gennery, \{A. R.\} and Davies, \{E. G.\} and Z. Allwood and Arkwright, \{P. D.\} and M. Helbert and Longhurst, \{H. J.\} and S. Grigoriadou and Devlin, \{L. A.\} and A. Huissoon and Krishna, \{M. T.\} and S. Hackett and Kumararatne, \{D. S.\} and Condliffe, \{A. M.\} and H. Baxendale and K. Henderson and C. Bethune and C. Symons and P. Wood and K. Ford and S. Patel and R. Jain and S. Jolles and T. El-Shanawany and H. Alachkar and A. Herwadkar and R. Sargur and A. Shrimpton and G. Hayman and M. Abuzakouk and G. Spickett and Darroch, \{C. J.\} and S. Paulus and Marshall, \{S. E.\} and Mcdermott, \{E. M.\} and Heath, \{P. T.\} and R. Herriot and S. Noorani and M. Turner and S. Khan and B. Grimbacher",

year = "2014",

month = jan,

doi = "10.1111/cei.12172",

language = "English",

volume = "175",

pages = "68--78",

journal = "Clinical and Experimental Immunology",

issn = "0009-9104",

publisher = "Oxford University Press",

number = "1",

}

Edgar, JDM, Buckland, M, Guzman, D, Conlon, NP, Knerr, V, Bangs, C, Reiser, V, Panahloo, Z, Workman, S, Slatter, M, Gennery, AR, Davies, EG, Allwood, Z, Arkwright, PD, Helbert, M, Longhurst, HJ, Grigoriadou, S, Devlin, LA, Huissoon, A, Krishna, MT, Hackett, S, Kumararatne, DS, Condliffe, AM, Baxendale, H, Henderson, K, Bethune, C, Symons, C, Wood, P, Ford, K, Patel, S, Jain, R, Jolles, S, El-Shanawany, T, Alachkar, H, Herwadkar, A, Sargur, R, Shrimpton, A, Hayman, G, Abuzakouk, M, Spickett, G, Darroch, CJ, Paulus, S, Marshall, SE, Mcdermott, EM, Heath, PT, Herriot, R, Noorani, S, Turner, M, Khan, S & Grimbacher, B 2014, 'The United Kingdom Primary Immune Deficiency (UKPID) Registry: Report of the first 4 years' activity 2008-2012', Clinical and Experimental Immunology, vol. 175, no. 1, pp. 68-78. https://doi.org/10.1111/cei.12172

TY - JOUR

T1 - The United Kingdom Primary Immune Deficiency (UKPID) Registry

T2 - Report of the first 4 years' activity 2008-2012

AU - Edgar, J. D.M.

AU - Buckland, M.

AU - Guzman, D.

AU - Conlon, N. P.

AU - Knerr, V.

AU - Bangs, C.

AU - Reiser, V.

AU - Panahloo, Z.

AU - Workman, S.

AU - Slatter, M.

AU - Gennery, A. R.

AU - Davies, E. G.

AU - Allwood, Z.

AU - Arkwright, P. D.

AU - Helbert, M.

AU - Longhurst, H. J.

AU - Grigoriadou, S.

AU - Devlin, L. A.

AU - Huissoon, A.

AU - Krishna, M. T.

AU - Hackett, S.

AU - Kumararatne, D. S.

AU - Condliffe, A. M.

AU - Baxendale, H.

AU - Henderson, K.

AU - Bethune, C.

AU - Symons, C.

AU - Wood, P.

AU - Ford, K.

AU - Patel, S.

AU - Jain, R.

AU - Jolles, S.

AU - El-Shanawany, T.

AU - Alachkar, H.

AU - Herwadkar, A.

AU - Sargur, R.

AU - Shrimpton, A.

AU - Hayman, G.

AU - Abuzakouk, M.

AU - Spickett, G.

AU - Darroch, C. J.

AU - Paulus, S.

AU - Marshall, S. E.

AU - Mcdermott, E. M.

AU - Heath, P. T.

AU - Herriot, R.

AU - Noorani, S.

AU - Turner, M.

AU - Khan, S.

AU - Grimbacher, B.

PY - 2014/1

Y1 - 2014/1

N2 - This report summarizes the establishment of the first national online registry of primary immune deficency in the United Kingdom, the United Kingdom Primary Immunodeficiency (UKPID Registry). This UKPID Registry is based on the European Society for Immune Deficiency (ESID) registry platform, hosted on servers at the Royal Free site of University College, London. It is accessible to users through the website of the United Kingdom Primary Immunodeficiency Network (www.ukpin.org.uk). Twenty-seven centres in the United Kingdom are actively contributing data, with an additional nine centres completing their ethical and governance approvals to participate. This indicates that 36 of 38 (95%) of recognized centres in the United Kingdom have engaged with this project. To date, 2229 patients have been enrolled, with a notable increasing rate of recruitment in the past 12 months. Data are presented on the range of diagnoses recorded, estimated minimum disease prevalence, geographical distribution of patients across the United Kingdom, age at presentation, diagnostic delay, treatment modalities used and evidence of their monitoring and effectiveness.

AB - This report summarizes the establishment of the first national online registry of primary immune deficency in the United Kingdom, the United Kingdom Primary Immunodeficiency (UKPID Registry). This UKPID Registry is based on the European Society for Immune Deficiency (ESID) registry platform, hosted on servers at the Royal Free site of University College, London. It is accessible to users through the website of the United Kingdom Primary Immunodeficiency Network (www.ukpin.org.uk). Twenty-seven centres in the United Kingdom are actively contributing data, with an additional nine centres completing their ethical and governance approvals to participate. This indicates that 36 of 38 (95%) of recognized centres in the United Kingdom have engaged with this project. To date, 2229 patients have been enrolled, with a notable increasing rate of recruitment in the past 12 months. Data are presented on the range of diagnoses recorded, estimated minimum disease prevalence, geographical distribution of patients across the United Kingdom, age at presentation, diagnostic delay, treatment modalities used and evidence of their monitoring and effectiveness.

KW - Human studies

KW - Immunodeficiency-primary

KW - Infections

KW - Intravenous immunoglobulin therapy (IVIG)

KW - Therapy/immunotherapy

UR - https://www.scopus.com/pages/publications/84888879046

U2 - 10.1111/cei.12172

DO - 10.1111/cei.12172

M3 - Article

C2 - 23841717

AN - SCOPUS:84888879046

SN - 0009-9104

VL - 175

SP - 68

EP - 78

JO - Clinical and Experimental Immunology

JF - Clinical and Experimental Immunology

IS - 1

ER -

The United Kingdom Primary Immune Deficiency (UKPID) Registry: Report of the first 4 years' activity 2008-2012

Abstract

ASJC Scopus subject areas

Keywords

Access to Document

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