Digital health and Clinical Patient Management System (CPMS) platform utility for data sharing of neuromuscular patients: the Italian EURO-NMD experience

Orphanet Journal of Rare Diseases

Research

Claudio Bruno¹  Chiara Panicucci¹  Francesca Bianchi²  Gabriele Siciliano²  Francesca Torri²  Giulia Ricci²  Massimiliano Filosto³  Stefano Cotti Piccinelli³  Alessandro Malandrini⁴  Nila Volpi⁴  Fabio Giannini⁴  Diego Lopergolo⁴  Nicola Ticozzi⁵  Federico Verde⁵  Vincenzo Silani⁵  Elena Pegoraro⁶  Chiara Brusa⁷  Giulio Gadaleta⁷  Luca Solero⁷  Tiziana Mongini⁷  Roberta Zeuli⁸  Paola D’Ambrosio⁸  Esther Picillo⁸  Mariateresa Zanobio⁸  Cristina Peduto⁸  Vincenzo Nigro⁹  Cristina Sancricca^1,10  Guido Primiano^1,10  Serenella Servidei^1,10  Marianna Farnè^1,11  Fernanda Fortunato^1,11  Alessandra Ferlini^1,11  Marcella Neri^1,12  Francesca Gualandi^1,12  Silvia Bonanno^1,13  Giulia Nicocia^1,14  Alessia Pugliese^1,14  Antonio Toscano^1,15  Teresinha Evangelista^1,16  Roberta Brusa^1,17  Monica Sciacco^1,17  Carlo Minetti^1,18  Antonio Atalaia^1,19  Christian Lunetta^2,20  Alice Zanolini^2,20  Valeria A. Sansone^2,21  Michela Catteruccia^2,22  Daria Diodato^2,22  Enrico Bertini^2,22  Davide Pareyson^2,23  Silvia Fenu^2,23 

[1] Center of Translational and Experimental Myology, IRCCS Istituto Giannina Gaslini, Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, University of Genoa, Genoa, Italy;Department of Clinical and Experimental Medicine, Neurological Clinic, University of Pisa, Pisa, Italy;Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy;ASST Spedali Civili Di Brescia, Brescia, Italy;NeMO-Brescia Clinical Center for Neuromuscular Diseases, Brescia, Italy;Department of Medical, Surgical and Neurological Sciences, University of Siena, Siena, Italy;Department of Neurology and Laboratory of Neuroscience, IRCCS Istituto Auxologico Italiano, Milan, Italy;Department of Pathophysiology and Transplantation, “Dino Ferrari” Center, Università Degli Studi Di Milano, Milan, Italy;Department of Neuroscience, University of Padova, Padua, Italy;Department of Neurosciences “Rita Levi Montalcini”, University of Turin, Turin, Italy;Department of Precision Medicine, University of Campania “L. Vanvitelli”, Naples, Italy;Department of Precision Medicine, University of Campania “L. Vanvitelli”, Naples, Italy;Telethon Institute of Genetics and Medicine (TIGEM), Pozzuoli, Naples, Italy;Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy;Medical Genetics Unit, Department of Medical Sciences, University of Ferrara, Ferrara, Italy;Medical Genetics Unit, Department of Mother and Child, Sant’Anna University Hospital of Ferrara, Ferrara, Italy;Medical Genetics Unit, Department of Mother and Child, Sant’Anna University Hospital of Ferrara, Ferrara, Italy;Neuroimmunology and Neuromuscular Diseases Unit, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy;Neurology and Neuromuscular Diseases Unit, Department of Clinical and Experimental Medicine, University of Messina, Messina, Italy;Neurology and Neuromuscular Diseases Unit, Department of Clinical and Experimental Medicine, University of Messina, Messina, Italy;ERN-NMD Center of Messina, Department of Clinical and Experimental Medicine, University of Messina, Messina, Italy;Neuromuscular Morphology Unit, Institute of Myology, GHU Pitié-Salpêtrière, Sorbonne Université, Paris, France;Neuromuscular and Rare Disease Unit, Department of Neuroscience, Foundation IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy;Pediatric Neurology Unit and Muscle Unit, IRCCS Istituto Giannina Gaslini, Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, University of Genoa, Genoa, Italy;Service of Neuromyology, APHP-GH Pitié-Salpêtrière, Sorbonne Université, Paris, France;The NEMO (NEuroMuscular Omniservice) Clinical Center, Milan, Italy;The NEMO (NEuroMuscular Omniservice) Clinical Center, Milan, Italy;Neurorehabilitation Unit, University of Milan, Milan, Italy;Unit of Neuromuscular and Neurodegenerative Disorders, Department of Neurosciences, Bambino Gesù Children’s Hospital IRCCS, Rome, Italy;Unit of Rare Neurodegenerative and Neurometabolic Diseases, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy;

关键词: Telemedicine;    CPMS;    ERN;    Rare diseases;    Digital health;   

DOI  :  10.1186/s13023-023-02776-5

 received in 2022-09-15, accepted in 2023-06-18,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundThe development of e-health technologies for teleconsultation and exchange of knowledge is one of the core purposes of European Reference Networks (ERNs), including the ERN EURO-NMD for rare neuromuscular diseases. Within ERNs, the Clinical Patient Management System (CPMS) is a web-based platform that seeks to boost active collaboration within and across the network, implementing data sharing. Through CPMS, it is possible to both discuss patient cases and to make patients’ data available for registries and databases in a secure way. In this view, CPMS may be considered a sort of a temporary storage for patients’ data and an effective tool for data sharing; it facilitates specialists’ consultation since rare diseases (RDs) require multidisciplinary skills, specific, and outstanding clinical experience.Following European Union (EU) recommendation, and to promote the use of CPMS platform among EURO-NMD members, a twelve-month pilot project was set up to train the 15 Italian Health Care Providers (HCPs). In this paper, we report the structure, methods, and results of the teaching course, showing that tailored, ERN-oriented, training can significantly enhance the profitable use of the CPMS.ResultsThroughout the training course, 45 professionals learned how to use the many features of the CPMS, eventually opening 98 panels of discussion—amounting to 82% of the total panels included in the EURO-NMD. Since clinical, genetic, diagnostic, and therapeutic data of patients can be securely stored within the platform, we also highlight the importance of this platform as an effective tool to discuss and share clinical cases, in order to ease both case solving and data storing.ConclusionsIn this paper, we discuss how similar course could help implementing the use of the platform, highlighting strengths and weaknesses of e-health for ERNs. The expected result is the creation of a “map” of neuromuscular patients across Europe that might be improved by a wider use of CPMS.

【 授权许可】

CC BY   
© The Author(s) 2023

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