A systematic review of collaborative digital platforms: structuring the domain and research agenda

D Wegner, AB da Silveira, D Marconatto… - Review of Managerial …, 2024 - Springer
This article reviews the emerging literature on collaborative digital platforms, a stream of
research focused on platforms that spur the collaboration of participants of various kinds and …

Use of telemedicine healthcare Systems in Children and Adolescents with chronic disease or in transition stages of life: consensus document of the Italian Society of …

S Esposito, C Rosafio, F Antodaro, A Argentiero… - Journal of personalized …, 2023 - mdpi.com
Telemedicine is considered an excellent tool to support the daily and traditional practice of
the health profession, especially when referring to the care and management of chronic …

Rare disease education in Europe and beyond: time to act

B Tumiene, H Peters, B Melegh, B Peterlin… - Orphanet journal of rare …, 2022 - Springer
People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact
that care systems are not sufficiently aligned with their needs and healthcare workforce …

More room for telemedicine after COVID-19: lessons for primary care?

L Garattini, M Badinella Martini, M Zanetti - The European Journal of …, 2021 - Springer
Background The COVID-19 pandemic has put under pressure all the European health care
systems, regardless of their type and structure. Telemedicine (TM) has been an almost …

Australian children living with rare diseases: health service use and barriers to accessing care

S Teutsch, Y Zurynski, GD Eslick, M Deverell… - World Journal of …, 2023 - Springer
Background Children with rare diseases experience challenges at home and school and
frequently require multi-disciplinary healthcare. We aimed to determine health service …

mHealth in sub-Saharan Africa and Europe: A systematic review comparing the use and availability of mHealth approaches in sub-Saharan Africa and Europe

GT Aboye, M Vande Walle, GL Simegn… - Digital …, 2023 - journals.sagepub.com
Background mHealth can help with healthcare service delivery for various health issues, but
there's a significant gap in the availability and use of mHealth systems between sub …

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

F Fortunato, F Bianchi, G Ricci, F Torri… - Orphanet journal of rare …, 2023 - Springer
Background The development of e-health technologies for teleconsultation and exchange of
knowledge is one of the core purposes of European Reference Networks (ERNs), including …

The awareness of rare diseases among medical students and practicing physicians in the Republic of Kazakhstan. An exploratory study

D Walkowiak, K Bokayeva, A Miraleyeva… - Frontiers in Public …, 2022 - frontiersin.org
Although national plans or strategies for rare diseases (RDs) have been implemented in
many jurisdictions research show that one of the main barriers RD patients face during …

[HTML][HTML] The importance of psychological support for parents and caregivers of children with a rare disease at diagnosis

T Kenny, K Bogart, A Freedman… - Rare Disease and …, 2022 - oaepublish.com
Rare diseases are complex and difficult to diagnose, with parents and caregivers often
reporting significant delays in receiving a definitive diagnosis. Following diagnosis, parents …

A systematic review of the use of telehealth to facilitate a diagnosis for children with developmental concerns

C La Valle, E Johnston, H Tager-Flusberg - Research in developmental …, 2022 - Elsevier
Background Telehealth can reduce the gap between developmental concern and diagnosis.
Evaluation of telehealth methods is needed for providers to make decisions about using …