This paper is in the following e-collection/theme issue:

Research Infrastructures and Registries (70) Secondary Use of Clinical Data for Research and Surveillance (412)

Published on in Vol 8, No 10 (2020): October

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/17420, first published .
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

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

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

Authors of this article:

Raphael Scheible1, 2 Author Orcid Image ;   Dennis Kadioglu3 Author Orcid Image ;   Stephan Ehl2 Author Orcid Image ;   Marco Blum1 Author Orcid Image ;   Martin Boeker1 Author Orcid Image ;   Michael Folz3 Author Orcid Image ;   Bodo Grimbacher2, 4, 5, 6 Author Orcid Image ;   Jens Göbel3 Author Orcid Image ;   Christoph Klein7 Author Orcid Image ;   Alexandra Nieters2, 8 Author Orcid Image ;   Stephan Rusch2, 8 Author Orcid Image ;   Gerhard Kindle2, 8 Author Orcid Image ;   Holger Storf3 Author Orcid Image
Article Authors Cited by (4) Tweetations (1) Metrics

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  1. Ruseckaite R, Mudunna C, Caruso M, Helwani F, Millis N, Lacaze P, Ahern S. Current state of rare disease registries and databases in Australia: a scoping review. Orphanet Journal of Rare Diseases 2023;18(1) View
  2. Rashid R, Copelli S, Silverstein J, Becich M. REDCap and the National Mesothelioma Virtual Bank—a scalable and sustainable model for rare disease biorepositories. Journal of the American Medical Informatics Association 2023;30(10):1634 View
  3. Klausen T, Hartig V, Fuchs D, Krueger N, Jeltsch V, Bild R, Scheible R. A Digital Vaccination Pass Using Fast Healthcare Interoperability Resources: A Proof of Concept. Digital 2024;4(2):389 View
  4. Specht L, Scheible R, Boeker M, Farin-Glattacker E, Kampel N, Schmölz M, Schöpf-Lazzarino A, Schulz S, Schlett C, Thomczyk F, Voigt-Radloff S, Wegner C, Wollmann K, Maun A. Evaluating the Acceptance and Usability of an Independent, Noncommercial Search Engine for Medical Information: Cross-Sectional Questionnaire Study and User Behavior Tracking Analysis. JMIR Human Factors 2025;12:e56941 View