MeDeMSA - Medical Decision Making in Multiple System Atrophy

Multiple system atrophy (MSA) is a rare, fatal, rapidly progressive neurodegenerative adulthood disease, characterized by difficulties in regulating blood pressure and bladder control, as well as body movements. Current unmet medical needs in taking care of people with MSA are missed diagnosis in early phases, suboptimal treatment and lack of supportive strategies towards the end of life. The Medical Decision Making in MSA Research Group was established to develop personalized diagnostic and therapeutic approaches for people living with MSA. The MeDeMSA ultimate goals are to enable an early identification of people with MSA. Further aims of the research studies are the improvement of the patients and their caregivers quality of life throughout the disease. The studies will be accomplished under carefully considered ethical, legal and health-economic aspects. Several new research approaches are being followed by the MeDeMSA research group: i. a prospective validation of artificial-intelligence supported diagnostic pathways for people with suspected MSA; ii. models of care tailored on the needs of people living with MSA throughout the course of the disease, which will reduce the physical distance between people with MSA, their doctors and therapists through implementing telemedicine and mobile palliative teams; iii. focus on decision-analytic modeling, ethical and regulatory aspects of MSA medical decisions. The MeDeMSA Research Group,coordinated by Alessandra Fanciulli, comprises investigators with profound expertise in MSA management (Alessandra Fanciulli and Florian Krismer, Medical University of Innsbruck), Health Technology Assessment and Medical Decision Analysis (Beate Jahn, UMIT TIROL) and Health Care Ethics (Martina Schmidhuber, University of Graz). A scientific advisory board of 13 national and international experts (Gregor K. Wenning, Klaus Seppi, Birgit Högl, Andreas Schlager, Georg Göbel, Barbara Sperner-Unterweger, Gudrun Schönherr, Uwe Siebert, Gaby Sroczynski, Daniela Schmid, Andrea Knoflach-Gabis, Stefan Lorenzl, Anette Schrag) will support the Research Group with their clinical and scientific advice throughout the project. The cooperation with international stakeholders in the fields of biobanking, MSA advocacy, palliative care and Health Technology Assessment will foster the internationalization and distribute the MeDeMSA Research Group achievements across borders. We are convinced to provide innovative clinical, socio- and health- economic frameworks, embedded in bioethical schemes, to manage rare neurodegenerative disorders, relevant for both the Austrian and the international health systems.