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PAFORSE is a patient-driven research project for rare diseases. The project aims to strengthen patient participation in the planning and implementation of possible direct and indirect follow-up projects to the ongoing project "Collaboration on Rare Diseases (CORD-MI)". This will be substantially supported by the formulation of complementary project objectives by patient representatives in ACHSE e.V. and by the formulation of requirements in workshops from ACHSE e.V. member groups.  The concept, technology, and method proposals are to be formulated in such a way that they can be applied in other scenarios in addition to being included in the application for CORD-MI-2. Patient-operated or newly proposed patient-managed documentation (optionally medical record, registry, diary) will be conceptualized as they can be linked to data assets in one or more data integration centers at university hospitals. Communication from people with rare diseases to researchers will be implemented through three sequential online workshops, a written survey, and exemplary expert interviews.In a first online workshop at the beginning of the third quarter of 2021, representatives of the member organizations of ACHSE e.V. will report their previous experiences with patient-led documentation to the researchers from CORD-MI and then discuss them together.  Particular attention will be paid to documentation that already supports diagnosis and contains therapy recommendations or refers to the se-atlas.The main results will then be discussed by the patient representatives and with the help of the CORD-MI project office.CORD-MI project office in the form of a questionnaire. This will be sent tomembers of ACHSE e.V. with the aim of obtaining a more comprehensive and differentiated view of the and differentiated view of the patients' experiences with various digital "disease narratives," e.g., through personal patient records, registries, diaries.In parallel, three patient groups who operate such documentation will be offered to present their expertise in expert interviews and to report openly on their experiences, expectations, successes, and disappointments. Based on the feedback from the questionnaires and the interviews, the focus of the next workshop in October 2021 will be set. In addition to expertise, the research side will also be central here, namely, the extent to which the insights gained could be implemented technically and methodologically. The third workshop in November 2021 will serve to collectively secure the results and is to the third workshop in November 2021 will serve to jointly secure the results and will include the presentation of the preliminary CORD-MI-2 proposition. Finally, the results will be made available to patient organizations as well as to the academic community and the Innovation Fund Office of the Federal Joint Committee (G-BA) in order to initiate further projects in the field of documentation development and IT-based diagnosis and therapy support. 


Dr. Josef Schepers

Medical Data Scientist / Coordinator for Medical Informatics


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