ArticleClinical and experimental immunology2007
The European internet-based patient and research database for primary immunodeficiencies: results 2004-06.
Article in Clinical and experimental immunology, 2007. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 47 papers.
What it found
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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
47 citing papers in PubMed, 125 citations in OpenAlex.
- The United Kingdom Primary Immune Deficiency (UKPID) Registry: report of the first 4 years' activity 2008-2012.Clinical and experimental immunology · 2014Trial
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- A State of the Art Review on the Recalcitrant Candidiasis as a Clue of Inborn Errors of Immunity in Newborns.Journal of immunology research · 2026Review
- First report from the Czech national registry of inborn errors of immunity (2012-2025).Frontiers in immunology · 2025Article
- Eosinophilia in children: characteristics, etiology and diagnostic algorithm.European journal of pediatrics · 2023Article
- A systematic overview of rare disease patient registries: challenges in design, quality management, and maintenance.Orphanet journal of rare diseases · 2023Review
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- Primary Antibody Deficiencies With Pulmonary Complications: A Single-Center Experience.Cureus · 2022Article
- TREC/KREC levels in children with ataxia-telangiectasia.Immunologic research · 2021Article
- Primary Immunodeficiencies: Diseases of Children and Adults - A Review.Advances in experimental medicine and biology · 2021Review
- The Importance of Primary Immune Deficiency Registries: The United States Immunodeficiency Network Registry.Immunology and allergy clinics of North America · 2020Review
- Article
- The impact of combining educational program with the improving of infrastructure to diagnose on early detection of primary immunodeficiencies in children.Immunologic research · 2019Article
- A 1-Year Prospective French Nationwide Study of Emergency Hospital Admissions in Children and Adults with Primary Immunodeficiency.Journal of clinical immunology · 2019Article
- Differences in Patient Demographics and Healthcare Costs of Patients with PIDD Receiving Intravenous or Subcutaneous Immunoglobulin Therapies in the United States.American health & drug benefits · 2019Article
- Targeted screening for primary immunodeficiency disorders in the neonatal period and early infancy.African health sciences · 2019Article
- Immunoglobulin use in immune deficiency in the UK: a report of the UKPID and National Immunoglobulin Databases.Clinical medicine (London, England) · 2018Article
- The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017.Clinical and experimental immunology · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Because primary immunodeficiencies (PID) are rare diseases, transnational studies are essential to maximize the scientific outcome and lead to improved diagnosis and therapy. Immunologists in Europe have united to determine the prevalence of PID in Europe and to establish and evaluate harmonized guidelines for the diagnosis and treatment of PID as well as to improve the awareness of PID in Europe. In order to achieve this aim we have developed an internet-based database for clinical and research data on patients with PID. This database forms the platform for studies of demographics, the development of new diagnostic and therapeutic strategies and the identification of novel disease-associated genes. The database is completely secure, while providing access to researchers via a standard browser using password and encrypted log-in sessions and conforms to all European and national ethics and data protection guidelines. So far 2386 patients have been documented by 35 documenting centres in 20 countries. Common variable immunodeficiency (CVID) is the most common entity, accounting for almost 30% of all entries. First statistical analyses on the quality of life of patients show the advantages of immunoglobulin replacement therapy, at the same time revealing a mean diagnostic delay of over 4 years. First studies on specific questions on selected PID are now under way. The platform of this database can be used for any type of medical condition.
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Registered trials
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.