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This section contains the Registry publication rules and offers a list of all publications based on data from the ESID Online Database for Primary Immunodeficiencies.

Publication rules, application form for studies

The following pdf contains the regulations for data access to and publications from the ESID Database for PID. These have been defined by the ESID Registry Steering Committee in June 2012 and updated in April 2014. 
In addition, we offer an application form for study initatives wishing to use data from the ESID Database. Please refer to the respective section 'Studies'

Last updated on May 31, 2014

The following is a list of publications from the ESID Online Database, listed chronologically, starting with the latest publication.
Downloads are available where permissible.

2017

Pac M et al., Arch Med Sci. (2017), Gastrointestinal disorders next to respiratory infections as leading symptoms of X-linked agammaglobulinemia in children - 34-year experience of a single center. (PMID: 28261296)

Dunogué B et al., Clin Infect Dis. (2017) Chronic Granulomatous Disease in Patients Reaching Adulthood: A Nationwide Study in France.  (PMID: 28362954)

Fischer A et al., JACI, (2017) Autoimmune and inflammatory manifestations occur frequently in primary immunodeficiencies. ( PMID: 28192146)

2016

Bertinchamp R et al. (Adult DEFI study group). J Allergy Clin Immunol Pract. (2016), Exclusion of Patients with a Severe T-Cell Defect Improves the Definition of Common Variable Immunodeficiency. (PMID: 27522107).

Arslan S  Ann Allergy Asthma Immunol. (2016), How effective are the 6 European Society of Immunodeficiency warning signs for primary immunodeficiency disease? (PMID: 26815708)

De Vries E. et al. Orphanet J Rare Dis (2016), Primary immunodeficiency associated with chromosomal aberration - an ESID Survey. (PMID: 27484815)

Barlogis et al (CEREDIH group). J Allergy Clin Immunol (2016),  Physical health conditions and quality of life in adults with primary immune deficiency diagnosed during childhood: a nationwide study

Renke J et al., Cent Eur J Immunol. (2016), Transient hypogammaglobulinaemia of infants in children with mastocytosis - strengthened indications for vaccinations. (PMID 27833446)

Schatorjé EJ et al. Orphanet J Rare Dis. (2016) Primary immunodeficiency associated with chromosomal aberration - an ESID survey. ( PMID: 27484815)

Schatorjé EJ et al. J Clin Immunol. (2016) The Challenge of Immunoglobulin-G Subclass Deficiency and Specific Polysaccharide Antibody Deficiency - a Dutch Pediatric Cohort Study. (PMID: 26846287)

Jandus P et al. Rev Med Suisse (2016) [Understanding primary immunodeficiencies: usefulness of a register].[Article in French]  (PMID: 27197327)

Pac M, Bernatowska E. Eur J Pediatr. (2016) [Comprehensive activities to increase recognition of primary immunodeficiency and access to immunoglobulin replacement therapy in Poland]. (PMID: 27357411)

2015

Milota T et al. Int Arch Allergy Immunol. (2015) Negativity for Specific Autoantibodies in Patients with Type 1 Diabetes That Developed on a Background of Common Variable Immunodeficiency. (PMID: 26796963)

Brignier AC et al. JACI (2015) Early-onset hypogammaglobulinemia: A survey of 44 patients. (PMID: 25959671)

Marschall K et al. Clin Exp Immunol. (2015) The Swiss National Registry for Primary Immunodeficiencies: Report on the first 6 years' activity 2008-2014. (PMID: 26031847)

Jonkman-Berk BM et al. Clin Immunol. (2015) Primary immunodeficiencies in the Netherlands: National patient data demonstrate the increased risk of malignancy. (PMID: 25451158)

Turley AJ et al. J Clin Immunol.(2015) Spectrum and Management of Complement Immunodeficiencies (Excluding Hereditary Angioedema) Across Europe. (PMID: 25663093)

Aydin SE et al. J Clin Immunol. (2015) DOCK8 Deficiency: Clinical and Immunological Phenotype and Treatment Options - a Review of 136 Patients. (PMID: 25627830)

Salvator H et al. Eur Respir J. (2015) Pulmonary manifestations in adult patients with chronic granulomatous disease. (PMID: 25614174)

Suarez F et al. J Clin Oncol. (2015) Incidence, presentation, and prognosis of malignancies in ataxia-telangiectasia: a report from the French national registry of primary immune deficiencies. (PMID: 25488969)

2014

Kindle G et al. Curr Opin Allergy Clin Immunol. (2014) The use of databases in primary immunodeficiencies. (PMID: 25225780)

Gathmann B et al. JACI (2014) Clinical picture and treatment of 2212 patients with common variable immunodeficiency. (PMID: 24582312 )

Magnani A et al. J Allergy Clin Immunol. (2014) Inflammatory manifestations in a single-center cohort of patients with chronic granulomatous disease. PMID: 24985400

Schatorjé EJ et al. Clin Exp Immunol. (2014) The PedPAD study: Boys predominate in the hypogammaglobulinemia registry of the ESID Online Database.
(PMID: 24506305)

Stonebraker JS et al. J Clin Immunol. (2014) Modeling Primary Immunodeficiency Disease Epidemiology and Its Treatment to Estimate Latent Therapeutic Demand for Immunoglobulin.
(PMID: 24338563)

Grimbacher B Clin Exp Immunol. (2014) The European Society for Immunodeficiencies (ESID) registry 2014. (PMID: 25546747)

2013

Wie häufig sind Immundefekte wirklich? (published in the journal of the German PID patient organisation DSAI (www.dsai.de))

Edgar JD et al. Clinical Experimental Immunology (2013) The United Kingdom Primary Immune Deficiency (UKPID) Registry: Report of the first 4 years' activity 2008-2012.
(PMID: 23841717)

Verma N et al. Drugs Aging. (2013) Therapeutic Management of Primary Immunodeficiency in Older Patients. (PMID: 23605785)
Includes statistics from the ESID Database.

Mahlaoui N et al. Blood (2013) Characteristics and outcome of early-onset, severe forms of Wiskott-Aldrich syndrome. (PMID: 23264593)
Study by the French CEREDIH using data from its national registry.

2012

Micol R. et al. JACI (2012) Protective effect of IgM against colonization of the respiratory tract by nontypeable Haemophilus influenzae in patients with hypogammaglobulinemia. (PMID 22153772)

A retrospective U.S.-European study by the International DiGeorge Syndrome Immunodeficiency Consortium (including data from many ESID Database centres)

2011

Beauté J et al. Pediatr Infect Dis J. (2011) Epidemiology and outcome of invasive fungal diseases in patients with chronic granulomatous disease: a multicenter study in France (PMID: 20700078)

Blumental S et al. Clin Infect Dis. (2011) Invasive mold infections in chronic granulomatous disease: a 25-year retrospective survey. Dec;53(12):e159-69. PubMed PMID: 22080130.

Presented at AAAAI meeting in San Francisco, March 2011

Presented at AAAAI meeting in San Francisco, March 2011

2010

X-linked thrombocytopenia (XLT) due to WAS mutations: Clinical characteristics, long-term outcome, and treatment options. (PMID: 20173115)

The French national registry of primary immunodeficiency diseases. (PMID: 20399414)

2009

Genetic and demographic features of X-linked agammaglobulinemia in Eastern and Central Europe: A cohort study (cites statistics from the ESID Database) (PMID: 19419768 )

Presents results from the ESID, USIDnet and other PID registries (PMID: 19883420)

New epidemiological results from the ESID Database, based on the data of 7,430 patients (November 2008) (PMID: 19630863).

2003-2008

Neuroendocrine carcinoma associated with X-linked hyper-immunoglobulin M syndrome: Report of four cases and review of the literature (ESID Database was instrumental in identifying cases) (PMID: 18805740)

Articles on the ESID Database and the UK PID Registry published in the online journal of the International Patient Organisation for Primary Immunodeficiencies (IPOPI -  www.ipopi.org)

An article focussing on data from Germany (includes editorial notes). (PMID: 18813884 )

This article reviews recent publications both on PID database systems themselves and the research performed using results from these databases. (PMID: 17989523)

An article published in the journal of the German PID patient organisation DSAI (www.dsai.de).

A technical description of the database system (PMID: 17237056)

First peer-reviewed publication of data in the ESID database (PMID: 17223972)

The earliest article on the ESID Online Database to be published in a scientific journal.

application/pdf

Knerr The Source (2006)

Pdf, 49.79 kB

An article published in the newsmagazine of the Plasma Protein Therapeutics Association (PPTA -  www.pptaglobal.org)

application/pdf

Abedi The Source (2003)

Pdf, 97.74 kB

A "historic" article on the results of the "old" ESID registry (1992-2002), the forerunner of today's online database. This article was published in the newsmagazine of the Plasma Protein Therapeutics Association (PPTA - www.pptaglobal.org)