Enabling External Inquiries to an Existing Patient Registry by Using the Open Source Registry System for Rare Diseases: Demonstration of the System Using the European Society for Immunodeficiencies Registry

Raphael Scheible   ^{1, 2} , MSc ;   Dennis Kadioglu   ³ , MSc ;   Stephan Ehl   ² , Prof Dr ;   Marco Blum   ¹ , BSc ;   Martin Boeker   ¹ , Prof Dr ;   Michael Folz   ³ , Dipl-Inf ;   Bodo Grimbacher   ^{2, 4, 5, 6} , Prof Dr ;   Jens Göbel   ³ , BSc ;   Christoph Klein   ⁷ , Prof Dr Dr ;   Alexandra Nieters   ^{2, 8} , PD Dr ;   Stephan Rusch   ^{2, 8} ;   Gerhard Kindle   ^{2, 8 *} , Dr, Dipl-Inf ;   Holger Storf   ^{3 *} , Dr

¹ Institute of Medical Biometry and Statistics, Medical Center, Faculty of Medicine, University of Freiburg, Freiburg, Germany

² Institute for Immunodeficiency, Center for Chronic Immunodeficiency, Medical Center, Faculty of Medicine, University of Freiburg, Freiburg, Germany

³ Medical Informatics Group, University Hospital Frankfurt, Frankfurt am Main, Germany

⁴ German Center for Infection Research, Satellite Center Freiburg, Freiburg, Germany

⁵ Centre for Integrative Biological Signalling Studies, University of Freiburg, Freiburg, Germany

⁶ RESIST, Cluster of Excellence 2155 to Hanover Medical School, Satellite Center Freiburg, Freiburg, Germany

⁷ Department of Pediatrics, Dr von Hauner Children’s Hospital, University Hospital, Ludwig Maximilians Universität München, München, Germany

⁸ FREEZE Biobank, Center for Biobanking, Medical Center, Faculty of Medicine, University of Freiburg, Freiburg, Germany

*these authors contributed equally