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

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Title: The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017
Authors: 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
Item Type: Journal Article
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.
Issue Date: 1-Jun-2018
Date of Acceptance: 4-Mar-2018
URI: http://hdl.handle.net/10044/1/65551
DOI: https://dx.doi.org/10.1111/cei.13125
ISSN: 1365-2249
Publisher: Wiley
Start Page: 284
End Page: 291
Journal / Book Title: Clinical and Experimental Immunology
Volume: 192
Issue: 3
Copyright Statement: © 2018 Owner. This is the accepted version of the following article: 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. , Yong, P. F., Waruiru, C. , Pavaladurai, V. , Kelleher, P. , Herriot, R. , Bernatonienne, J. , Bhole, M. , Steele, C. , Hayman, G. , Richter, A. , Gompels, M. , Chopra, C. , Garcez, T. and Buckland, M. (2018), The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017. Clin Exp Immunol, 192: 284-291., which has been published in final form at https://dx.doi.org/10.1111/cei.13125
Keywords: Science & Technology
Life Sciences & Biomedicine
Immunology
autoimmunity
autoinflammatory disease
human
immunodeficiency diseases
transplantation
PRIMARY ANTIBODY DEFICIENCIES
INTERNET-BASED PATIENT
PRIMARY IMMUNODEFICIENCIES
CLINICAL-DIAGNOSIS
RESEARCH DATABASE
RECOGNITION
1107 Immunology
Publication Status: Published
Online Publication Date: 2018-05-25
Appears in Collections:Department of Medicine
Faculty of Medicine



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