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The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017
- Source :
- 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, Yong, P FK, Waruiru, C, Pavaladurai, V, Kelleher, P, Herriot, R, Bernatonienne, J, Bhole, M V, 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
- Publication Year :
- 2018
- Publisher :
- Wiley, 2018.
-
Abstract
- Summary 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.
- Subjects :
- Male
0301 basic medicine
medicine.medical_specialty
Immunology
Prevalence
CLINICAL-DIAGNOSIS
03 medical and health sciences
autoinflammatory disease
Humans
Immunology and Allergy
Medicine
Registries
Autoinflammatory disease
human
Science & Technology
business.industry
Incidence (epidemiology)
PRIMARY IMMUNODEFICIENCIES
autoimmunity
Immunologic Deficiency Syndromes
RECOGNITION
RESEARCH DATABASE
Original Articles
medicine.disease
United Kingdom
Transplantation
immunodeficiency diseases
030104 developmental biology
Treatment modality
1107 Immunology
Clinical diagnosis
Family medicine
Epidemiological Monitoring
PRIMARY ANTIBODY DEFICIENCIES
Primary immunodeficiency
Female
Database research
business
Life Sciences & Biomedicine
INTERNET-BASED PATIENT
transplantation
Subjects
Details
- Language :
- English
- ISSN :
- 00099104
- Database :
- OpenAIRE
- Journal :
- 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, Yong, P FK, Waruiru, C, Pavaladurai, V, Kelleher, P, Herriot, R, Bernatonienne, J, Bhole, M V, 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
- Accession number :
- edsair.doi.dedup.....4e7eb502f66e29f12c0f2a7e68f11d8b