Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 May 24.
doi: 10.1007/s00702-025-02933-z. Online ahead of print.

MeDeMSA care study protocol: developing personalized best medical care with integrated mobile palliative and telemedicine support for individuals with multiple system atrophy

Alessandra Fanciulli  1 , Bianca Caliò  2 , Svenja Schmidt  2 , Georg Goebel  3 , Fabian Leys  2 , Karoline Radl  2 , Caroline Breitegger  4 , Marjan Arvandi  5 , Alexa Blum  6 , Christoph Gabl  7 , Oliver Galvan  8 , Achim Herms  9 , Birgit Högl  2 , Bernhard Holzner  5   10 , Frank Jagusch  2 , Stefan Kiechl  2 , Andrea Knoflach-Gabis  7 , Mariella Koegl  11 , Igor Kuchin  5 , Stefan Lorenzl  12 , Werner Poewe  2 , Sinikka Prajczer  7 , Gerhard Rumpold  6 , Andreas Schlager  13 , Anette Schrag  14 , Klaus Seppi  15 , Uwe Siebert  5   16   17 , Gudrun Schönherr  2 , Gaby Sroczynski  10 , Martina Schmidhuber  4 , Petra Schwingenschuh  9 , Beate Jahn  10 , Florian Krismer  2 , Gregor K Wenning  2
Affiliations

MeDeMSA care study protocol: developing personalized best medical care with integrated mobile palliative and telemedicine support for individuals with multiple system atrophy

Alessandra Fanciulli et al. J Neural Transm (Vienna). .

Abstract

Multiple system atrophy (MSA) represents a management challenge due to its variable clinical presentation, and lack of established multidisciplinary care protocols. In advanced stages, physical barriers often prevent access to specialized care, leaving patients and caregivers to face complications and fear alone. This 18-month, monocentric, open-label study evaluates the impact of a personalized, multidisciplinary treatment, integrating mobile palliative care, on the quality of life (QoL, measured by EQ-5D-5L indices) of MSA individuals compared to a matched historical European MSA cohort. Forty-six participants will undergo baseline clinical, psychological, and neuro-rehabilitation assessments, along with an online interview to identify individual healthcare preferences. These assessments will guide personalized therapeutic plans, including palliative care, self-directed physio-, speech, and occupational exercises, based on operational protocols informed by evidence and good clinical practice. Six-, 12-, and 18-month follow-ups will reassess needs and adapt plans to address disease progression and changing preferences, ensuring continuous personalization. Repeated interviews at month-12, phone-calls and satisfaction surveys at month-1, 7, 13, and 18 will monitor compliance, identify barriers, and gather feedback. A subgroup of 23 participants will be block-wise randomized to additionally receive monthly and on-demand telemedicine visits for tailored support. Informal caregivers will join an 18-month observational study assessing their QoL and burden through repeated evaluations, offering insights into evolving challenges. We expect that multidisciplinary, patient-centered care with integrated mobile palliative and telemedicine support helps to warrant continuity of care and improve the QoL of MSA individuals throughout the disease course. Its acceptance, safety, and cost-effectiveness will be also assessed.

Keywords: Advance care planning; Caregivers; Multiple system atrophy; Neuro-rehabilitation; Palliative medicine; Telemedicine.

PubMed Disclaimer

Conflict of interest statement

Declarations. Conflict of interest: The authors declare no relevant conflicts of interest related to the present work. The full disclosures of all authors are provided hereinafter. Alessandra Fanciulli: receives support from the FWF-Austrian Science Fund for the present work (FWF FG 2700). Outside of the present work, AF reports royalties from Springer Verlag, speaker fees and honoraria from Antag Therapeutics, American Academy of Neurology, Austrian Neurology Society, Austrian Autonomic Society, Bial, Broadview Ventures, CNSystem, Desitin, Donau Krems University, Elsevier, GE Healthcare, Healthware International, International Parkinson Disease and Movement Disorders Society, KABEG, Medizin Forum, Medtronic, Prime Global, Sanofi, Theravance Biopharma, and research grants from the Medical University of Innsbruck, Mission MSA, Dr Johannes and Hertha Tuba Foundation and Austrian Exchange Program. Dr Fanciulli is an associate editor of Clinical Autonomic Research and Autonomic Neuroscience. Dr Fanciulli is the president elect of the European Federation of Autonomic Society and of the Austrian Autonomic Society, coordinates the Disease Group on Atypical Parkinsonian Disorders of the European Reference Network for Rare Neurological Disorders and a guideline project on the symptomatic treatment of atypical Parkinsonian Syndromes for the European Academy of Neurology. Bianca Caliò: PhD position funded by the Austrian Science Fund (FWF FG 2700). Svenja Schmidt: nothing to report. Georg Goebel: nothing to report. Fabian Leys: nothing to report. Karoline Radl: nothing to report, part-time position funded by the Austrian Science Fund (FWF FG 2700). Caroline Breitegger: PhD position funded by the Austrian Science Fund (FWF FG 2700). Marjan Arvandi: nothing to report. Alexa Blum: part-time position funded by the Austrian Science Fund (FWF FG 2700). Christoph Gabl: reports lecture fees from various providers of training in palliative care in Austria. Oliver Galvan: reports about speaker fees from the International Parkinson Disease and Movement Disorders Society, outside of the present work. Achim Herms: reports speaker fees from IBSA, Wellspect, Publicare, Interstitial Cystitis support group Chronisch Krank Austria, AZW Training Center West for Health Professionals Innsbruck, Working Group Urogynecology and Reconstructive Surgery of the Pelvic Floor, Austrian Neurology Society, International Parkinson Disease and Movement Disorders Society; Member of the Commission for Neuro-Urology of SIUD (Società Italiana di Urodinamica), outside of the present work. Birgit Högl: nothing to report. Bernhard Holzner: holds intellectual property rights on the CHES telemedicine tool used in the MeDeMSA Care trial. Frank Jagusch: PhD position funded by the Austrian Science Fund (FWF FG 2700). Stefan Kiechl: nothing to report. Andrea Knoflach-Gabis: is the medical director of the Tyrolean Hospice Association and is responsible for the medical and therapeutic aspects of palliative and hospice care for patients and relatives in all areas (palliative ward, mobile team, palliative outpatient clinic, day hospice). Mariella Koegl: reports speaker fees and honoraria from Abbvie, Merz, Allergan, Stada, UCB Pharma and KABEG, outside of the present work. Igor Kuchin: PhD position funded by the Austrian Science Fund (FWF FG 2700). Dr Kuchin reports honoraria as technical review committee member from ViiV Healthcare Positive Action. Ongoing voluntary roles include advisory board member and trustee for Y + Global, member of the scientific committee of the International Workshop on Adolescence, SRHR & HIV, and mentor with the International AIDS Society mentorship programme. Past voluntary roles include consultancies for AIHWA and 180 Degrees Consulting Innsbruck, board member and chairperson for Y + Global. Dr Kuchin was previously employed as a medical advisor at Sanofi. Stefan Lorenzl: nothing to report. Werner Poewe: reports personal fees from Alterity, AbbVie, Affiris, AstraZeneca, BIAL, Biogen, Britannia, Lilly, Lundbeck, Neuroderm, Neurocrine, Denali Pharmaceuticals, Novartis, Orion Pharma, Roche, Takeda, Teva, UCB and Zambon for consultancy and lecture fees in relation to clinical drug development programmes for PD, royalties from Thieme, Wiley Blackwell, Oxford University Press, and Cambridge University Press, and research grants from MJFF, EU FP7 & Horizon 2020, outside of the present work. Sinikka Prajczer: nothing to report. Gerhard Rumpold: holds intellectual property rights on the CHES telemedicine tool used in the MeDeMSA Care trial. Andreas Schlager: nothing to report. Anette Schrag: reports research funding or support from University College London, National Institute of Health (NIHR), National Institute for Health Research ULCH Biomedical Research Centre, the International Parkinson and Movement Disorder Society (IPMDS), the European Commission, Parkinson’s UK, GE Healthcare and the Economic and Social Research Council. Honoraria for consultancy from Biogen, Abbvie, Roche, Bial, GE Healthcare; and license fee payments from the University College London for the MSA-QoL, PSP-QoL and PQolCarers. Royalties from Oxford University Press. Klaus Seppi: reports honoraria from the International Parkinson and Movement Disorders Society, grants from the FWF Austrian Science Fund, the Michael J. Fox Foundation, and the International Parkinson and Movement Disorder Society, as well as personal fees from Teva, UCB, Lundbeck, AOP Orphan Pharmaceuticals AG, AbbVie, Roche, and Grünenthal, outside the submitted work. Uwe Siebert: nothing to report. Gudrun Schönherr: nothing to report. Gaby Sroczynski: nothing to report. Martina Schmidhuber: received support from the FWF-Austrian Science Fund for the present work (FWF FG 2700). Petra Schwingenschuh: receives support from the FWF-Austrian Science Fund for the present work (FWF FG 2700). Outside of the present work, PS reports speaker fees and/or honoraria from AbbVie, Boston Scientific, Bial, and Stada. Beate Jahn: receives support from the FWF-Austrian Science Fund for the present work (FWF FG 2700). Florian Krismer: receives support from the FWF-Austrian Science Fund for the present work (FWF FG 2700). Outside of the present work, FK received personal fees from AbbVie, Bial, Institut de Recherches Internationales Servier, Koneksa, Österreichische Apotheker-Verlagsgesellschaft, Sanofi, Takeda Pharmaceuticals, and Teva in the past 36 months and his institution has ongoing grant support from the Medical University Innsbruck, National Institutes of Health, and the Michael J Fox Foundation, outside of the submitted work. Gregor K. Wenning: author deceased.

References

    1. Adams JL, Myers TL, Waddell EM, Spear KL, Schneider RB (2020) Telemedicine: A valuable tool in neurodegenerative diseases. Curr Geriatr Rep 9(2):72–81. https://doi.org/10.1007/s13670-020-00311-z - DOI - PubMed - PMC
    1. Blok DC-D B, Del Popolo G, et al. (2022) EAU guidelines on neuro-urology
    1. Bloem BR, Henderson EJ, Dorsey ER, Okun MS, Okubadejo N, Chan P, Andrejack J, Darweesh SKL, Munneke M (2020) Integrated and patient-centred management of Parkinson’s disease: a network model for reshaping chronic neurological care. Lancet Neurol 19(7):623–634. https://doi.org/10.1016/S1474-4422(20)30064-8 - DOI - PubMed - PMC
    1. Bloem BR, Okun MS, Klein C (2021) Parkinson’s disease. Lancet 397(10291):2284–2303. https://doi.org/10.1016/S0140-6736(21)00218-X - DOI - PubMed
    1. Borders JC, Sevitz JS, Malandraki JB, Malandraki GA, Troche MS (2021) Objective and subjective clinical swallowing outcomes via telehealth: reliability in outpatient clinical practice. Am J Speech Lang Pathol 30(2):598–608. https://doi.org/10.1044/2020_AJSLP-20-00234 - DOI - PubMed

LinkOut - more resources