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

B. Shillitoe; C. Bangs; D. Guzman; A. R. Gennery; H. J. Longhurst; M. Slatter; D. M. Edgar; M. Thomas; A. Worth; A. Huissoon; P. D. Arkwright; S. Jolles; H. Bourne; H. Alachkar; S. Savic; D. S. Kumararatne; S. Patel; H. Baxendale; S. Noorani; P. F.K. Yong; C. Waruiru; V. Pavaladurai; P. Kelleher; R. Herriot; J. Bernatonienne; M. Bhole; C. Steele; G. Hayman; A. Richter; M. Gompels; C. Chopra; T. Garcez; M. Buckland

doi:10.1111/cei.13125

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

B. Shillitoe, C. Bangs, D. Guzman, A. R. Gennery, H. J. Longhurst, M. Slatter, D. M. Edgar, M. Thomas, A. Worth, A. Huissoon, P. D. Arkwright, S. Jolles, H. Bourne, H. Alachkar, S. Savic, D. S. Kumararatne, S. Patel, H. Baxendale, S. Noorani, P. F.K. YongC. Waruiru, V. Pavaladurai, P. Kelleher, R. Herriot, J. Bernatonienne, M. Bhole, C. Steele, G. Hayman, A. Richter, M. Gompels, C. Chopra, T. Garcez, M. Buckland (Lead / Corresponding author)

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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 United Kingdom. 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 United Kingdom 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 United Kingdom, which may not otherwise be available without the existence of a well-established registry.

Original language	English
Pages (from-to)	284-291
Number of pages	8
Journal	Clinical and Experimental Immunology
Volume	192
Issue number	3
Early online date	25 May 2018
DOIs	https://doi.org/10.1111/cei.13125
Publication status	Published - 1 Jun 2018

Keywords

autoimmunity
autoinflammatory disease
human
immunodeficiency diseases
transplantation

ASJC Scopus subject areas

Immunology and Allergy
Immunology

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1111/cei.13125

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Shillitoe, B., Bangs, C., Guzman, D., Gennery, A. R., Longhurst, H. J., Slatter, M., Edgar, D. M., Thomas, M., Worth, A., Huissoon, A., Arkwright, P. D., Jolles, S., Bourne, H., Alachkar, H., Savic, S., Kumararatne, D. S., Patel, S., Baxendale, H., Noorani, S., ... Buckland, M. (2018). The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017. Clinical and Experimental Immunology, 192(3), 284-291. https://doi.org/10.1111/cei.13125

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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 United Kingdom. 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 United Kingdom 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 United Kingdom, which may not otherwise be available without the existence of a well-established registry.",

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Shillitoe, B, Bangs, C, Guzman, D, Gennery, AR, Longhurst, HJ, Slatter, M, Edgar, DM, Thomas, M, Worth, A, Huissoon, A, Arkwright, PD, Jolles, S, Bourne, H, Alachkar, H, Savic, S, Kumararatne, DS, Patel, S, Baxendale, H, Noorani, S, Yong, PFK, Waruiru, C, Pavaladurai, V, Kelleher, P, Herriot, R, Bernatonienne, J, Bhole, M, Steele, C, Hayman, G, Richter, A, Gompels, M, Chopra, C, Garcez, T & Buckland, M 2018, 'The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017', Clinical and Experimental Immunology, vol. 192, no. 3, pp. 284-291. https://doi.org/10.1111/cei.13125

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AU - Shillitoe, B.

AU - Bangs, C.

AU - Guzman, D.

AU - Gennery, A. R.

AU - Longhurst, H. J.

AU - Slatter, M.

AU - Edgar, D. M.

AU - Thomas, M.

AU - Worth, A.

AU - Huissoon, A.

AU - Arkwright, P. D.

AU - Jolles, S.

AU - Bourne, H.

AU - Alachkar, H.

AU - Savic, S.

AU - Kumararatne, D. S.

AU - Patel, S.

AU - Baxendale, H.

AU - Noorani, S.

AU - Yong, P. F.K.

AU - Waruiru, C.

AU - Pavaladurai, V.

AU - Kelleher, P.

AU - Herriot, R.

AU - Bernatonienne, J.

AU - Bhole, M.

AU - Steele, C.

AU - Hayman, G.

AU - Richter, A.

AU - Gompels, M.

AU - Chopra, C.

AU - Garcez, T.

AU - Buckland, M.

PY - 2018/6/1

Y1 - 2018/6/1

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AB - 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 United Kingdom. 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 United Kingdom 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 United Kingdom, which may not otherwise be available without the existence of a well-established registry.

KW - autoimmunity

KW - autoinflammatory disease

KW - human

KW - immunodeficiency diseases

KW - transplantation

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DO - 10.1111/cei.13125

M3 - Article

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AN - SCOPUS:85047922968

SN - 0009-9104

VL - 192

SP - 284

EP - 291

JO - Clinical and Experimental Immunology

JF - Clinical and Experimental Immunology

IS - 3

ER -

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

Abstract

Keywords

ASJC Scopus subject areas

UN SDGs

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