OSSE - Open Source Registry System for Rare Diseases

OSSE is an open source software solution for building and operating disease-specific patient registries. To promote interoperability, data elements are defined in a central metadata repository and used to create forms in the FormEditor. Data entry and pseudonymization of data is done through a web-based user interface.

OSSE was developed until 2015 as part of the National Action Plan for People with Rare Diseases. Since then, the software has been used in various local, national and international patient registries and is constantly being further developed as part of research projects.

Further information about the software and its features can be found on the project website www.osse-register.de.

OSSE License

OSSE is an open source project and is available under the GNU Affero General Public License (GNU AGPL-3.0) published by the Free Software Foundation. This permits users of the open source code to:

• use the code for commercial purposes
• modify the code
• distribute copies or modified versions of the code (also released under the GNU AGPL)

The full text of the license can be found here.

OSSE Source Code

The source code for the OSSE EDC is available for download and use from a public Bitbucket repository.