The German National Registry of Primary Immunodeficiencies (2012-2017)

Frontiers in Immunology
S M El-HelouBodo Grimbacher

Abstract

Introduction: The German PID-NET registry was founded in 2009, serving as the first national registry of patients with primary immunodeficiencies (PID) in Germany. It is part of the European Society for Immunodeficiencies (ESID) registry. The primary purpose of the registry is to gather data on the epidemiology, diagnostic delay, diagnosis, and treatment of PIDs. Methods: Clinical and laboratory data was collected from 2,453 patients from 36 German PID centres in an online registry. Data was analysed with the software Stata® and Excel. Results: The minimum prevalence of PID in Germany is 2.72 per 100,000 inhabitants. Among patients aged 1-25, there was a clear predominance of males. The median age of living patients ranged between 7 and 40 years, depending on the respective PID. Predominantly antibody disorders were the most prevalent group with 57% of all 2,453 PID patients (including 728 CVID patients). A gene defect was identified in 36% of patients. Familial cases were observed in 21% of patients. The age of onset for presenting symptoms ranged from birth to late adulthood (range 0-88 years). Presenting symptoms comprised infections (74%) and immune dysregulation (22%). Ninety-three patients were diagnosed without prior cli...Continue Reading

References

Sep 25, 2008·Nature Reviews. Molecular Cell Biology·Martin F Lavin
Jan 6, 2009·Mayo Clinic Proceedings·Avni Y JoshiThomas G Boyce
Apr 20, 2010·Clinical Immunology : the Official Journal of the Clinical Immunology Society·
Dec 30, 2011·Journal of Clinical Immunology·Waleed Al-Herz, Mohamed A A Moussa
Apr 24, 2013·Clinical and Experimental Immunology·B GathmannG Kindle
Apr 9, 2014·Journal of Clinical Immunology·Kathleen E SullivanCharlotte Cunningham-Rundles
Sep 17, 2014·Current Opinion in Allergy and Clinical Immunology·Gerhard KindleBodo Grimbacher
Jun 3, 2015·Clinical and Experimental Immunology·K MarschallUNKNOWN Swiss PID Registry Working Group
Jul 25, 2017·The Journal of Allergy and Clinical Immunology·Nizar MahlaouiUNKNOWN CEREDIH Prevalence Study Collaborators
Oct 12, 2018·Journal of Clinical Immunology·Hassan AbolhassaniAsghar Aghamohammadi
Feb 19, 2019·The Journal of Allergy and Clinical Immunology. in Practice·Markus G SeidelUNKNOWN ESID Registry Working Party and collaborators

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Citations

Jul 29, 2020·Expert Review of Clinical Immunology·Hassan AbolhassaniAsghar Aghamohammadi
Jun 2, 2020·Frontiers in Immunology·Denise Helena Boton PereiraLuiz Euribel Prestes-Carneiro
Aug 28, 2020·Frontiers in Immunology·Anna A MukhinaAnna Yu Shcherbina
Sep 3, 2020·World Journal of Clinical Oncology·Meinolf SuttorpFrédéric Millot
Sep 29, 2020·Frontiers in Immunology·Intan Juliana Abd HamidZarina Thasneem Zainudeen
Jul 14, 2020·Frontiers in Immunology·Marcin ZiętkiewiczKarina Jahnz-Różyk
Oct 8, 2020·World Journal of Clinical Cases·Ewa Więsik-Szewczyk, Karina Jahnz-Różyk
Jan 13, 2021·Annals of Clinical Biochemistry·Teng HooAndrew McLean-Tooke
Apr 10, 2021·Deutsches Ärzteblatt International·Anja LüdersUNKNOWN screening laboratories in Germany
Apr 26, 2021·The Journal of Allergy and Clinical Immunology·Julian ThalhammerUNKNOWN European Society for Immunodeficiencies Registry Working Party
Mar 5, 2021·Scandinavian Journal of Immunology·Lina-Maria Castaño-JaramilloMaria Del Mar Saez-de-Ocariz Gutierrez
Nov 14, 2020·The Journal of Allergy and Clinical Immunology. in Practice·Andrea A MauracherJana Pachlopnik Schmid
Jun 22, 2021·Current Opinion in Immunology·Neftali J RamirezBodo Grimbacher
Jun 29, 2021·Pediatric and Developmental Pathology : the Official Journal of the Society for Pediatric Pathology and the Paediatric Pathology Society·Aleksandra Szczawinska-PoplonykRenata Langfort
Jun 2, 2021·Clinical and Experimental Immunology·Adiratna Mat RipenSaharuddin Bin Mohamad
Aug 24, 2021·Frontiers in Immunology·Julia KörholzWilliam Rae

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Methods Mentioned

BETA
biopsy

Software Mentioned

PID
MS Excel
NET
Mainzelliste
Stata®

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