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; Helen Baxendale; S. Noorani; P.F.K. Yong; C. Waruiru; V. Pavaladurai; Peter 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, Helen Baxendale, S. Noorani, P.F.K. YongC. Waruiru, V. Pavaladurai, Peter Kelleher, R. Herriot, J. Bernatonienne, M. Bhole, C. Steele, G. Hayman, A. Richter, M. Gompels, C. Chopra, T. Garcez, M. Buckland^*

^*Corresponding author for this work

Bristol Medical School (PHS)

Research output: Contribution to journal › Article (Academic Journal) › peer-review

63 Citations (Scopus)

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

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

@article{3822a44c249344239c9cdfddb258a503,

title = "The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017",

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.",

keywords = "autoimmunity, autoinflammatory disease, human, immunodeficiency diseases, transplantation",

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

year = "2018",

month = jun,

day = "1",

doi = "10.1111/cei.13125",

language = "English",

volume = "192",

pages = "284--291",

journal = "Clinical and Experimental Immunology",

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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

TY - JOUR

T1 - The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017

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, Helen

AU - Noorani, S.

AU - Yong, P.F.K.

AU - Waruiru, C.

AU - Pavaladurai, V.

AU - Kelleher, Peter

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

N2 - 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.

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

UR - http://www.scopus.com/inward/record.url?scp=85047922968&partnerID=8YFLogxK

U2 - 10.1111/cei.13125

DO - 10.1111/cei.13125

M3 - Article (Academic Journal)

C2 - 29878323

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

UN SDGs

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