B1 German National Registry for Primary Immunodeficiencies (PID) (Support Code: 01GM1517C)

Within the PID-NET framework, we have established a national patient registry for primary immunodeficiencies.

This national PID registry is the first attempt ever to gather data on the epidemiology of PID for all Germany. By creating this database, we will be able to calculate reliable numbers on the prevalence, diagnosis and treatment of PID. Furthermore, the database is designed as a national platform for research collaborations which will provide researchers with cohorts large enough to initiate further clinical trials and genetic analyses.

The registry is incorporated within the Online Database System provided by the European Society for Immunodeficiencies (ESID). Several German medical centres specialized in PID care have been participating in the ESID Database network since its start in 2004. Until April 2009, these centres had documented an overall number of 630 patients. To accelerate the documentation process and to relieve medical centres from the burden of documentation, we have employed a medical data entry clerk who visits medical centres and enters patient data on site. The documentation progress is shown in the chart below.


On this page, we will publish news on the progress of this national registry, such as current patient numbers, publications, collaborations and new studies.

If you are a physician taking care of PID patients and are interested in participating in this project, please send us an e-mail: registry@pid-net.org
or call us at: +49 761 270 34450

ESID Logo More information on the ESID Database network for primary immunodeficiencies is available on the ESID website: www.esid.org

AID-NET Logo Medical centres that also attend patients with autoinflammatory disorders are encouraged to contribute their data to the German AID Registry:
AID-NET Registry

Sabine M. El-Helou M.A. ,  medical data entry clerk and coordinator

Geographic Distribution of Centres in Germany.

Centres that are located in the same city are subsumed under the city’s name.
Point markers are proportional to the number of reported patients.
NB: The registration of current patients has not been completed in most of the centres!


Distribution of Patients by Main PID Categories


Distribution of Patients by Centres


Data as of June 2017