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 & 13 others 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

    Research output: Contribution to journalArticle

    3 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 languageEnglish
    Pages (from-to)284-291
    Number of pages8
    JournalClinical and Experimental Immunology
    Volume192
    Issue number3
    Early online date25 May 2018
    DOIs
    Publication statusPublished - 1 Jun 2018

    Fingerprint

    Registries
    Hematopoietic Stem Cell Transplantation
    Live Birth
    Cell- and Tissue-Based Therapy
    Allergy and Immunology
    Genetic Therapy
    Industry
    Research Personnel
    United Kingdom
    Incidence
    Therapeutics

    Keywords

    • autoimmunity
    • autoinflammatory disease
    • human
    • immunodeficiency diseases
    • transplantation

    Cite this

    Shillitoe, B., Bangs, C., Guzman, D., Gennery, A. R., Longhurst, H. J., Slatter, M., ... 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
    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.K. ; 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. / The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017. In: Clinical and Experimental Immunology. 2018 ; Vol. 192, No. 3. pp. 284-291.
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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

    The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017. / 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.K.; 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. (Lead / Corresponding author).

    In: Clinical and Experimental Immunology, Vol. 192, No. 3, 01.06.2018, p. 284-291.

    Research output: Contribution to journalArticle

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    AU - Shillitoe, B.

    AU - Bangs, C.

    AU - Guzman, D.

    AU - Gennery, A. R.

    AU - Longhurst, H. J.

    AU - Slatter, M.

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    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

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    Shillitoe B, Bangs C, Guzman D, Gennery AR, Longhurst HJ, Slatter M et al. The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017. Clinical and Experimental Immunology. 2018 Jun 1;192(3):284-291. https://doi.org/10.1111/cei.13125