The  U nited  K ingdom Primary Immune Deficiency ( UKPID ) Registry: report of the first 4 years' activity 2008–2012 | Zendy

Edgar J. D. M. | Zendy; Buckland M. | Zendy; Guzman D. | Zendy; Conlon N. P. | Zendy; Knerr V. | Zendy; Bangs C. | Zendy; Reiser V. | Zendy; Panahloo Z. | Zendy; Workman S. | Zendy; Slatter M. | Zendy; Gennery A. R. | Zendy; Davies E. G. | Zendy; Allwood Z. | Zendy; Arkwright P. D. | Zendy; Helbert M. | Zendy; Longhurst H. J. | Zendy; Grigoriadou S. | Zendy; Devlin L. A. | Zendy; Huissoon A. | Zendy; Krishna M. T. | Zendy; Hackett S. | Zendy; Kumararatne D. S. | Zendy; Condliffe A. M. | Zendy; Baxendale H. | Zendy; Henderson K. | Zendy; Bethune C. | Zendy; Symons C. | Zendy; Wood P. | Zendy; Ford K. | Zendy; Patel S. | Zendy; Jain R. | Zendy; Jolles S. | Zendy; ElShanawany T. | Zendy; Alachkar H. | Zendy; Herwadkar A. | Zendy; Sargur R. | Zendy; Shrimpton A. | Zendy; Hayman G. | Zendy; Abuzakouk M. | Zendy; Spickett G. | Zendy; Darroch C. J. | Zendy; Paulus S. | Zendy; Marshall S. E. | Zendy; McDermott E. M. | Zendy; Heath P. T. | Zendy; Herriot R. | Zendy; Noorani S. | Zendy; Turner M. | Zendy; Khan S. | Zendy; Grimbacher B. | Zendy

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The U nited K ingdom Primary Immune Deficiency ( UKPID ) Registry: report of the first 4 years' activity 2008–2012

Author(s) -

Edgar J. D. M.,

Buckland M.,

Guzman D.,

Conlon N. P.,

Knerr V.,

Bangs C.,

Reiser V.,

Panahloo Z.,

Workman S.,

Slatter M.,

Gennery A. R.,

Davies E. G.,

Allwood Z.,

Arkwright P. D.,

Helbert M.,

Longhurst H. J.,

Grigoriadou S.,

Devlin L. A.,

Huissoon A.,

Krishna M. T.,

Hackett S.,

Kumararatne D. S.,

Condliffe A. M.,

Baxendale H.,

Henderson K.,

Bethune C.,

Symons C.,

Wood P.,

Ford K.,

Patel S.,

Jain R.,

Jolles S.,

ElShanawany T.,

Alachkar H.,

Herwadkar A.,

Sargur R.,

Shrimpton A.,

Hayman G.,

Abuzakouk M.,

Spickett G.,

Darroch C. J.,

Paulus S.,

Marshall S. E.,

McDermott E. M.,

Heath P. T.,

Herriot R.,

Noorani S.,

Turner M.,

Khan S.,

Grimbacher B.

Publication year - 2014

Publication title -

clinical & experimental immunology

Language(s) - English

Resource type - Journals

SCImago Journal Rank - 1.329

H-Index - 135

eISSN - 1365-2249

pISSN - 0009-9104

DOI - 10.1111/cei.12172

Subject(s) - medicine , primary immunodeficiency , family medicine , pediatrics , disease , pathology

Summary This report summarizes the establishment of the first national online registry of primary immune deficency in the United Kingdom , the United Kingdom Primary Immunodeficiency ( UKPID Registry). This UKPID Registry is based on the E uropean S ociety for I mmune D eficiency ( ESID ) registry platform, hosted on servers at the R oyal F ree site of U niversity C ollege, L ondon. It is accessible to users through the website of the U nited K ingdom P rimary I mmunodeficiency N etwork ( www.ukpin.org.uk ). Twenty‐seven centres in the United Kingdom are actively contributing data, with an additional nine centres completing their ethical and governance approvals to participate. This indicates that 36 of 38 (95%) of recognized centres in the United Kingdom have engaged with this project. To date, 2229 patients have been enrolled, with a notable increasing rate of recruitment in the past 12 months. Data are presented on the range of diagnoses recorded, estimated minimum disease prevalence, geographical distribution of patients across the United Kingdom , age at presentation, diagnostic delay, treatment modalities used and evidence of their monitoring and effectiveness.

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