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

Ben Shillitoe; Catherine Bangs; David Guzman; Andrew R Gennery; HJ Longhurst; Mary Slatter; David Edgar; Moira Thomas; Austen Worth; A Huissoon; Peter Arkwright; S. Jolles; Helen Bourne; Hana Alachkar; Sinisa Savic; Dinakantha S. Kumararatne; S Patel; Helen Baxendale; S. Noorani; Patrick FK Yong; C Waruiru; V. Pavaladurai; P. Kelleher; R. Herriot; Jolanta Bernatonienne; Malini V. Bhole; C Steele; G Hayman; A. Richter; Mark Gompels; S. Paulus; Charu Chopra; Tomaz Garcez; M. Buckland

doi:10.1111/cei.13125

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

Ben Shillitoe, Catherine Bangs, David Guzman, Andrew R Gennery, HJ Longhurst, Mary Slatter, David Edgar, Moira Thomas, Austen Worth, A Huissoon, Peter Arkwright, S. Jolles, Helen Bourne, Hana Alachkar, Sinisa Savic, Dinakantha S. Kumararatne, S Patel, Helen Baxendale, S. Noorani, Patrick FK YongC Waruiru, V. Pavaladurai, P. Kelleher, R. Herriot, Jolanta Bernatonienne, Malini V. Bhole, C Steele, G Hayman, A. Richter, Mark Gompels, S. Paulus, Charu Chopra, Tomaz Garcez, M. Buckland

Division of Immunology, Immunity to Infection and Respiratory Medicine

The Christie Hospital NHS Foundation Trust

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

145 Downloads (Pure)

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

Original language	English
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 - Jun 2018

Access to Document

10.1111/cei.13125

Shillitoe et al PIDUK registry CEI 2018Accepted author manuscript, 2.97 MB

Cite this

Shillitoe, B., Bangs, C., Guzman, D., Gennery, A. R., Longhurst, HJ., Slatter, M., Edgar, D., Thomas, M., Worth, A., Huissoon, A., Arkwright, P., 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). https://doi.org/10.1111/cei.13125

@article{e190d1d891e3411ebceac3bc9dec11e0,

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

author = "Ben Shillitoe and Catherine Bangs and David Guzman and Gennery, {Andrew R} and HJ Longhurst and Mary Slatter and David Edgar and Moira Thomas and Austen Worth and A Huissoon and Peter Arkwright and S. Jolles and Helen Bourne and Hana Alachkar and Sinisa Savic and Kumararatne, {Dinakantha S.} and S Patel and Helen Baxendale and S. Noorani and Yong, {Patrick FK} and C Waruiru and V. Pavaladurai and P. Kelleher and R. Herriot and Jolanta Bernatonienne and Bhole, {Malini V.} and C Steele and G Hayman and A. Richter and Mark Gompels and S. Paulus and Charu Chopra and Tomaz Garcez and M. Buckland",

year = "2018",

month = jun,

doi = "10.1111/cei.13125",

language = "English",

volume = "192",

journal = "Clinical and experimental immunology",

issn = "0009-9104",

publisher = "John Wiley & Sons Ltd",

number = "3",

}

Shillitoe, B, Bangs, C, Guzman, D, Gennery, AR, Longhurst, HJ, Slatter, M, Edgar, D, Thomas, M, Worth, A, Huissoon, A, Arkwright, P, 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, MV, Steele, C, Hayman, G, Richter, A, Gompels, M, Paulus, S, 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. https://doi.org/10.1111/cei.13125

TY - JOUR

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

AU - Shillitoe, Ben

AU - Bangs, Catherine

AU - Guzman, David

AU - Gennery, Andrew R

AU - Longhurst, HJ

AU - Slatter, Mary

AU - Edgar, David

AU - Thomas, Moira

AU - Worth, Austen

AU - Huissoon, A

AU - Arkwright, Peter

AU - Jolles, S.

AU - Bourne, Helen

AU - Alachkar, Hana

AU - Savic, Sinisa

AU - Kumararatne, Dinakantha S.

AU - Patel, S

AU - Baxendale, Helen

AU - Noorani, S.

AU - Yong, Patrick FK

AU - Waruiru, C

AU - Pavaladurai, V.

AU - Kelleher, P.

AU - Herriot, R.

AU - Bernatonienne, Jolanta

AU - Bhole, Malini V.

AU - Steele, C

AU - Hayman, G

AU - Richter, A.

AU - Gompels, Mark

AU - Paulus, S.

AU - Chopra, Charu

AU - Garcez, Tomaz

AU - Buckland, M.

PY - 2018/6

Y1 - 2018/6

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

U2 - 10.1111/cei.13125

DO - 10.1111/cei.13125

M3 - Article

SN - 0009-9104

VL - 192

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

Access to Document

Fingerprint

Cite this