Update on the molecular aspects and methods underlying the complex architecture of FSHD

V Caputo, D Megalizzi, C Fabrizio, A Termine… - Cells, 2022 - mdpi.com
Despite the knowledge of the main mechanisms involved in facioscapulohumeral muscular
dystrophy (FSHD), the high heterogeneity and variable penetrance of the disease …

Sco** review of the recommendations and guidance for improving the quality of rare disease registries

JE Tarride, A Okoh, K Aryal, C Prada… - Orphanet Journal of …, 2024 - Springer
Abstract Background Rare disease registries (RDRs) are valuable tools for improving
clinical care and advancing research. However, they often vary qualitatively, structurally, and …

A big data platform exploiting auditable tokenization to promote good practices inside local energy communities

L Gagliardelli, L Zecchini, L Ferretti… - Future Generation …, 2023 - Elsevier
Abstract The Energy Community Platform (ECP) is a modular system conceived to promote a
conscious use of energy by the users inside local energy communities. It is composed of two …

A systematic review of telemedicine for neuromuscular diseases: components and determinants of practice

D Senyel, K Senn, J Boyd, K Nagels - BMC Digital Health, 2024 - Springer
Abstract Introduction Neuromuscular diseases (NMDs) entail a group of mostly inherited
genetic disorders with heterogeneous phenotypes impacting muscles, the central or …

Facioscapulohumeral Muscular Dystrophy European Patient Survey: Assessing Patient Reported Disease Burden and Preferences in Clinical Trial Participation

MM McNiff, S Hawkins, B Haase… - Journal of …, 2024 - content.iospress.com
Background: Facioscapulohumeral muscular dystrophy (FSHD) is a genetic disorder
characterized by progressive muscle weakness leading to permanent disability. There are …

Physical activity practiced at a young age is associated with a less severe subsequent clinical presentation in facioscapulohumeral muscular dystrophy

C Bettio, F Banchelli, V Salsi, R Vicini… - BMC Musculoskeletal …, 2024 - Springer
Background In facioscapulohumeral muscular dystrophy (FSHD), it is not known whether
physical activity (PA) practiced at young age is associated with the clinical presentation of …

A novel framework for remote management of social media big data analytics

AM Al-Shomar, M Al-Qurish, W Aljedaani - Social Network Analysis and …, 2022 - Springer
With the rapid expansion of social media users and the ever-increasing data exchange
between them, the era of big data has arrived. Integration of big data generates enormous …

Cloud-based digital healthcare development for precision medical hospital information system

SJ Oh, HJ Joo, JW Sohn, S Park, JS Jang… - Personalized …, 2023 - Taylor & Francis
Aim: This study aims to develop a cloud-based digital healthcare system for precision
medical hospital information systems (P-HIS). Methods: In 2020, international …

Post-transcriptional RNA stabilization of telomere-proximal RNAs FRG2, DBET, D4Z4 at human 4q35 in response to genotoxic stress and D4Z4 macrosatellite repeat …

V Salsi, F Losi, M Salani, PD Kaufman, R Tupler - bioRxiv, 2024 - biorxiv.org
Background Reduced copy number of the D4Z4 macrosatellite at human chromosome 4q35
is associated with facioscapulohumeral muscular dystrophy (FSHD). A pervasive idea is that …

A human pan-genomic analysis provides insights into the genetic and epigenetic make up of facioscapulohumeral muscular dystrophy

V Salsi, M Chiara, S Pini, P Kuś, L Ruggiero… - medRxiv, 2023 - medrxiv.org
Facioscapulohumeral muscular dystrophy (FSHD) is the only human disease associated
with epigenetic changes at a macrosatellite array. Almost 95% of FSHD cases carry a …