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The portal for medical data models is a German and European
medical research Medical research (or biomedical research), also known as health research, refers to the process of using scientific methods with the aim to produce knowledge about human diseases, the prevention and treatment of illness, and the promotion of ...
infrastructure. It is an
open-access Open access (OA) is a set of principles and a range of practices through which nominally copyrightable publications are delivered to readers free of access charges or other barriers. With open access strictly defined (according to the 2001 de ...
metadata-repository initiated for scientific purposes that can generate, analyse, release and reuse medical forms.


Background

Each day large amounts of data are gathered by
electronic health record An electronic health record (EHR) is the systematized collection of electronically stored patient and population health information in a digital format. These records can be shared across different health care settings. Records are shared thro ...
s. Because health care information systems are not compatible among themselves in general, structured data cannot easily be exchanged in between different institutions. Only a small part of all medical forms are openly available. Through this shortness of transparency, data-models adjustment processes in health care are being vastly interfered. Know-how of current or terminated studies and clinical documentation cannot be reused.


Goals and target audience

Primary goals for medical data models are releasing reliable medical forms and data models, establishing transparent and interoperable standards for medical research and raising efficiency in the design of case report files. Besides improving the quality of documentation forms by reusing reliable forms and data-models (Secondary Use, Best Practise), the comparability of research outcomes shall be enhanced. The portal is mainly established for medical professionals, for example: * Medical doctors * Medical Information Scientist * Data manager * Medical information specialist


Features

Currently, the portal contains more than 20.000 forms with more than 350.000 active data elements, making it Europe’s largest open-access portal for medical forms (March 2019). Available forms are: clinical research forms (Case Report Forms, Register-Items), routine documentation (e. g. EHR-forms) and quality assurance (e.g. data from the AQUA-Institute). Coded via UMLS-Metathesaurus, much content is available for semantic analyses. The content of the forms are provided in the standard data type for medical research ( CDISC ODM) and, besides the original format, available in various data types, for example REDCap, MACRO, CDA, CSV, ADL as well as in
Fast Healthcare Interoperability Resources The Fast Healthcare Interoperability Resources (FHIR, , like ''fire'') standard is a set of rules and specifications for the secure exchange of electronic health care data. It is designed to be flexible and adaptable, so that it can be used in a ...
(FHIR) Questionnaire Format. As concluded by the
FDA The United States Food and Drug Administration (FDA or US FDA) is a federal agency of the Department of Health and Human Services. The FDA is responsible for protecting and promoting public health through the control and supervision of food ...
, the CDISC ODM-XML-Format for documentation in pharmaceutical research will be mandatory within the next two years, the portal already meets state of the art demands.


Sustainability

In collaboration with the university and regional library in Münster, all gathered files are archived and allocated to every German library, securing a sustainable use of this meta-data-repository. The medical-data-portal is known as German (RIsources) and European research infrastructure (MERIL) and is developed by the Institute of Medical Informatics,
University of Münster The University of Münster (, until 2023 , WWU) is a public research university located in the city of Münster, North Rhine-Westphalia in Germany. With more than 43,000 students and over 120 fields of study in 15 departments, it is Germany's ...
, Germany.


Funding

The project is funded by the
German Research Foundation The German Research Foundation ( ; DFG ) is a German research funding organization, which functions as a self-governing institution for the promotion of science and research in the Federal Republic of Germany. In 2019, the DFG had a funding bud ...
(DFG, grant no. DU 352/11-1)


References

{{reflist, refs= {{cite web , url=http://risources.dfg.de/detail/RI_00396_de.html , title=DFG – Portal für Medizinische Datenmodelle (MDM) , last1= , first1= , last2= , first2= , date= , publisher=DFG, accessdate=27 April 2016 {{cite web, url=http://portal.meril.eu/converis-esf/publicweb/research_infrastructure/3574, title=MERIL – List of Research Infrastructure – MDM – Portal of Medical Data Models, publisher=MERIL, accessdate=26 January 2016, url-status=dead, archiveurl=https://web.archive.org/web/20160427093841/http://portal.meril.eu/converis-esf/publicweb/research_infrastructure/3574, archivedate=27 April 2016


External links


Official Portal webpage
Medical research in Europe