ArticleClinical and experimental immunology2012
The European internet-based patient and research database for primary immunodeficiencies: update 2011.
Article in Clinical and experimental immunology, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It has been retracted, and should not be counted. Cited by 43 papers, 2 of them syntheses that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
43 citing papers in PubMed, 2 syntheses or guidelines pooled it, 119 citations in OpenAlex.
- Pooled it
- ERS statement on the multidisciplinary respiratory management of ataxia telangiectasia.European respiratory review : an official journal of the European Respiratory Society · 2015Guideline
- The United Kingdom Primary Immune Deficiency (UKPID) Registry: report of the first 4 years' activity 2008-2012.Clinical and experimental immunology · 2014Trial
- Understanding the disease burden and unmet needs of patients with primary immunodeficiency in China: A quantitative study.Intractable & rare diseases research · 2026Article
- Spectrum of different categories of Primary Immunodeficiency Disorders diagnosed at Children Hospital.Pakistan journal of medical sciences · 2025Article
- Causes of Mortality in Patients with Inborn Errors of Immunity: An 18-year retrospective cohort study.Sultan Qaboos University medical journal · 2025Article
- Inborn Errors of Immunity-the Sri Lankan Experience 2010-2022.Journal of clinical immunology · 2023Article
- Which triggers could support timely identification of primary antibody deficiency? A qualitative study using the patient perspective.Orphanet journal of rare diseases · 2021Article
- The Primary Immunodeficiency Database in Japan.Frontiers in immunology · 2021Review
- Otitis Media and Inborn Errors of Immunity.Current allergy and asthma reports · 2020Review
- Lower T Regulatory and Th17 Cell Populations Predicted by RT-PCR-AmplifiedFrontiers in immunology · 2020Article
- Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry.Current opinion in hematology · 2020Observational
- Common variable immune deficiency, central diabetes insipidus, and anemia.Central-European journal of immunology · 2020Article
- Primary immunodeficiency disease: a retrospective study of 112 Chinese children in a single tertiary care center.BMC pediatrics · 2019Article
- Perceived health of patients with common variable immunodeficiency - a cluster analysis.Clinical and experimental immunology · 2019Article
- Targeted screening for primary immunodeficiency disorders in the neonatal period and early infancy.African health sciences · 2019Article
- Fourth Update on the Iranian National Registry of Primary Immunodeficiencies: Integration of Molecular Diagnosis.Journal of clinical immunology · 2018Article
- Prevalence of Granulomas in Patients With Primary Immunodeficiency Disorders, United States: Data From National Health Care Claims and the US Immunodeficiency Network Registry.Journal of clinical immunology · 2018Article
- Lessons from Genetic Studies of Primary Immunodeficiencies in a Highly Consanguineous Population.Frontiers in immunology · 2017Review
- Primary Immunodeficiency Diseases in Highly Consanguineous Populations from Middle East and North Africa: Epidemiology, Diagnosis, and Care.Frontiers in immunology · 2017Review
Corrections and comments
- Retraction · 2012-06-01Notice - Limited or No Information · Objections by Third Party · · 3/28/2017
- Retracted
Authors and funding
5 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
In order to build a common data pool and estimate the disease burden of primary immunodeficiencies (PID) in Europe, the European Society for Immunodeficiencies (ESID) has developed an internet-based database for clinical and research data on patients with PID. This database is a platform for epidemiological analyses as well as the development of new diagnostic and therapeutic strategies and the identification of novel disease-associated genes. Since its start in 2004, 13,708 patients from 41 countries have been documented in the ESID database. Common variable immunodeficiency (CVID) represents the most common entity with 2880 patients or 21% of all entries, followed by selective immunoglobulin A (sIgA) deficiency (1424 patients, 10·4%). The total documented prevalence of PID is highest in France, with five patients per 100,000 inhabitants. The highest documented prevalence for a single disease is 1·3 per 100,000 inhabitants for sIgA deficiency in Hungary. The highest reported incidence of PID per 100,000 live births was 16·2 for the period 1999-2002 in France. The highest reported incidence rate for a single disease was 6·7 for sIgA deficiency in Spain for the period 1999-2002. The genetic cause was known in 36·2% of all registered patients. Consanguinity was reported in 8·8%, and 18·5% of patients were reported to be familial cases; 27·9% of patients were diagnosed after the age of 16. We did not observe a significant decrease in the diagnostic delay for most diseases between 1987 and 2010. The most frequently reported long-term medication is immunoglobulin replacement.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.