We propose a standard model for a novel data access tier - registered access - to facilitate access to data that cannot be published in open access archives owing to ethical and legal risk. Based on an analysis of applicable research ethics and other legal and administrative frameworks, we discuss the general characteristics of this Registered Access Model, which would comprise a three-stage approval process: Authentication, Attestation and Authorization. We are piloting registered access with the Demonstration Projects of the Global Alliance for Genomics and Health for which it may provide a suitable mechanism for access to certain data types and to different types of data users.
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http://dx.doi.org/10.1038/ejhg.2016.115 | DOI Listing |
Healthcare (Basel)
January 2025
Integrated Therapies in Otolaryngology, Fondazione Policlinico Universitario Campus Bio-Medico, 00128 Rome, Italy.
Background: Obstructive sleep apnea (OSA) is a prevalent yet underdiagnosed condition associated with a major healthcare burden. Current diagnostic tools, such as full-night polysomnography (PSG), pose a limited accessibility to diagnosis due to their elevated costs. Recent advances in Artificial Intelligence (AI), including Machine Learning (ML) and deep learning (DL) algorithms, offer novel potential tools for an accurate OSA screening and diagnosis.
View Article and Find Full Text PDFHealthcare (Basel)
January 2025
Allied Health Research Unit, St Vincent's Health Network Sydney, Darlinghurst, NSW 2010, Australia.
Constraint-induced movement therapy (CIMT) is an evidence-based intervention for arm recovery after acquired brain injury. Clinician knowledge, time and confidence in delivering CIMT are established barriers to the routine use of CIMT in practice. CIMT delivery via telehealth is one option to help overcome these barriers.
View Article and Find Full Text PDFBMC Public Health
January 2025
School of Nursing, Medical School, Shenzhen University, Shenzhen, China.
Background: A significant number of primiparous women lack awareness of labor epidural analgesia, resulting in lower acceptance of labor epidural analgesia. Additional prenatal education may help primiparas understand labor epidural analgesia and increase labor epidural analgesia rates. This randomized controlled trial (RCT) will evaluate the effects of an online and offline prenatal labor epidural analgesia education program for primiparas to improve their labor epidural analgesia rate and to reduce their misunderstanding of labor epidural analgesia and fear of birth.
View Article and Find Full Text PDFLancet Child Adolesc Health
February 2025
Stellenbosch University, Faculty of Medicine and Health Sciences, Department of Paediatrics and Child Health, Desmond Tutu TB Centre, Tygerberg, South Africa.
Background: There are few data on the treatment of children and adolescents with multidrug-resistant (MDR) or rifampicin-resistant (RR) tuberculosis, especially with more recently available drugs and regimens. We aimed to describe the clinical and treatment characteristics and their associations with treatment outcomes in this susceptible population.
Methods: We conducted a systematic review and individual participant data meta-analysis.
PLoS One
January 2025
Division of Ophthalmology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America.
Purpose: The purpose of this systematic review was to consolidate and summarize available data comparing virtual reality perimetry (VRP) with standard automated perimetry (SAP) in adults with glaucoma. Understanding the utility and diagnostic performance of emerging VRP technology may expand access to visual field testing but requires evidence-based validation.
Methods: A systematic literature search was conducted in 3 databases (PubMed Central, Embase, and Cochrane Central Register of Controlled Trials) from the date of inception to 10/09/2024.
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