The Use Case “Collaboration on Rare Diseases” (CORD-MI) is a collaborative project comprising the four consortia of the Medical Informatics Initiative, in which numerous German university hospitals and partner institutions are involved. The aim is to improve care and research in the field of rare diseases. It builds on the Innovation Fund projects TRANSLATE-NAMSE and ZSE-DUO as well as the national DIMDI project “Coding of Rare Diseases” and uses the development status of the Medical Informatics Initiative across consortia.
It is estimated that around four million German citizens are affected by approximately 8,000 known rare diseases. Due to the rarity of each individual disease and the lack of consideration in hospital documentation, it is not yet possible to make concrete statements on the frequency, distribution and course of the disease, which has a negative impact on research, diagnosis and therapy. Based on the National Action Plan for People with Rare Diseases (NAMSE) from 2013, various measures have been implemented in Germany to support the coding of rare diseases (DIMDI-SE) and to create better care structures for patients in university hospitals (TRANSLATE-NAMSE, ZSE-Duo). In addition, there is a NAMSE strategy paper on digitisation needs for rare diseases. Despite these and other important care and research projects at national, European and international level, it has not yet been possible to establish sustainable structures for a digital network for data exchange for rare diseases.
CORD-MI wants to contribute to changing this situation and uses the organizational and technical solutions of the Medical Informatics Initiative to
1) improve the visibility of rare diseases 2) provide insights into the reality of supply, 3) improve the quality of patient care and 4) stimulate research in the field of rare diseases.
To this end, special concepts and solutions will be developed by 2022 to ensure that
the documentation of rare diseases in university hospitals is improved
the collected data can be shared and
data protection is ensured in the nationwide data collection and data evaluation.
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