Mapping of Health Care Providers
for People with Rare Diseases

Throughout Germany, 20 university hospitals and other partner institutions have joined the CORD-MI project to improve patient care and research in the field of rare diseases. The project builds on the infrastructure of the Medical Informatics Initiative (MII), which has organised itself in consortia for such conceptual and solution-oriented projects and is funded by the Federal Ministry of Education and Research (BMBF).

A central goal of the MII is the establishment of data integration centres. These provide data from clinical care as well as clinical and biomedical research in a data protection-compliant and uniform manner and make it available for evaluation across locations. CORD-MI tests the suitability of analytical methods and the quality of data on rare diseases available in university hospitals by addressing specific questions on rare diseases.

A major challenge in the field of rare diseases is the ICD-10-GM coding, which is often used for coding diagnoses in the outpatient and inpatient sectors. This key provides a detailed representation of only a few rare diseases, making it difficult to evaluate them. Rare diseases are often grouped together or coded unspecifically with the ICD-10 GM classification. An example of this is the ICD-10 GM code "L30.8 Sonstige näher bezeichnete Dermatitis", which maps 28 different entries non-specifically with only one code. Together with industry partners, solutions are therefore being developed to improve documentation with the help of special classifications (Orpha identification numbers & Alpha IDs). In addition to improving the documentation, the core data set of the MII is also being expanded and optimised. The core data set describes which data research institutions of all kinds have available for their research activities.

SE-ATLAS in context of use case CORD-MI

Synergies between MII consortia and existing structures will be maximised and improved. The SE-ATLAS team is a project partner in CORD-MI and contributes the expertise on the care and research situation on rare diseases that has been built up over the years. At the same time, the SE-ATLAS will benefit from the results of CORD-MI. A long-term improvement of the coding of rare diseases in health care, which will become more comprehensive as a result, will allow for a better allocation of diseases to health care facilities in the SE-ATLAS. The SE-ATLAS can thus better reflect the reality of care and provide more accurate information.