ANTLER statistical analysis plan, Version 3, 16 January 2020

This analysis plan sets out the methods of analysing the predetermined primary, secondary and health economic outcomes for ANTLER, which will be reported in the National Institute for Health Research, Health Technology Assessment report at the end of the trial and also in the main peer review paper(s) to result from this randomised controlled trial. The analysis and reporting of this trial will conform to the CONSORT and CHEERS statements and the appropriate standard operating procedures written by Priment Clinical Trials Unit. Further information on this trial can be found in the protocol version 7.0 (26/11/2018). The protocol is stored on: S:\Pop_Health\PCPH_Priment\Projects\Current\CTIMPS\ANTLER\6. Protocol\ANTLER_protocol_v7_20181126.pdf

Young people's understanding, attitudes and involvement in decision-making about genome sequencing for rare diseases: A qualitative study with participants in the UK 100,000 genomes project

Genome sequencing (GS) will have a profound impact on the diagnosis of rare and inherited diseases in children and young people. We conducted 27 semi-structured interviews with young people aged 11-19 having GS through the UK 100,000 Genomes Project. Participants demonstrated an understanding of the role and function of genes and DNA, however the terms 'genome' and 'genome sequencing' were less well understood. Participants were primarily motivated to take part to get a diagnosis or identify the gene causing their condition. The majority of participants understood they might not receive a diagnostic result. Most were unconcerned about data security or access, however anxieties existed around what the results might show and the potential for disappointment if the result was negative. Signing an assent form empowered young people, formalised the process and instilled a sense of responsibility for their choice to participate. Most young people (≥16 years) had consented to receive secondary findings and had come to that decision without parental influence. Our research suggests that at least some young people are capable of making informed decisions about taking part in GS, and that involving them in discussions about testing can empower them to take responsibility over healthcare decisions that affect them

A new fast-acting backup protection strategy for embedded MVDC links in future distribution networks

This paper presents a new fast-acting backup protection strategy for future hybrid ac-dc distribution networks. By examining the impedance measured by a distance protection relay measuring from the “ac-side” of the network, a unique characteristic is established for faults occurring on the “dc-side” of an embedded medium-voltage dc (MVDC) link, interconnecting two 33 kV distribution network sections. Based on the identified impedance characteristic, appropriate settings are developed and deployed on a verified software model of a commercially available distance protection relay. To remain stable for ac-side faults, it is found that the tripping logic of the device must be altered to provide correct time grading between standard, ac, protection zones and the fast-acting dc region, which can identify faults on the dc system within 40 ms. An additional confirmatory check is also employed to reduce the likelihood of mal-operation. Trials on a test system derived from an actual distribution network, which employs distance protection, are shown to provide stable operation for both ac-side and dc-side pole-pole and pole-pole-ground fault

From planning to deployment - insights into installing publicly-accessible journey EV charging infrastructure

Deploying publicly accessible electric vehicle charging infrastructure involves engaging with multiple stakeholders from various organisations to ensure successful project delivery. When installing a fleet of charging points across a wide area, the number of stakeholders increases often resulting in a disjointed or non-standardised experience for EV infrastructure developers. Based on real-world learnings, this paper suggests several improvements that could be implemented by distribution network operators that would help streamline infrastructure deployment and help accelerate the uptake of zero-carbon transport solutions

Development and mixed-methods evaluation of an online animation for young people about genome sequencing

Abstract: Children and young people with rare and inherited diseases will be significant beneficiaries of genome sequencing. However, most educational resources are developed for adults. To address this gap in informational resources, we have co-designed, developed and evaluated an educational resource about genome sequencing for young people. The first animation explains what a genome is, genomic variation and genome sequencing (“My Genome Sequence”: http://bit.ly/mygenomesequence), the second focuses on the limitations and uncertainties of genome sequencing (“My Genome Sequence part 2”: http://bit.ly/mygenomesequence2). In total, 554 school pupils (11–15 years) took part in the quantitative evaluation. Mean objective knowledge increased from before to after watching one or both animations (4.24 vs 7.60 respectively; t = 32.16, p < 0.001). Self-rated awareness and understanding of the words ‘genome’ and ‘genome sequencing’ increased significantly after watching the animation. Most pupils felt they understood the benefits of sequencing after watching one (75.4%) or both animations (76.6%). Only 17.3% felt they understood the limitations and uncertainties after watching the first, however this was higher among those watching both (58.5%, p < 0.001). Twelve young people, 14 parents and 3 health professionals consenting in the 100,000 Genomes Project reported that the animation was clear and engaging, eased concerns about the process and empowered young people to take an active role in decision-making. To increase accessibility, subtitles in other languages could be added, and the script could be made available in a leaflet format for those that do not have internet access. Future research could focus on formally evaluating the animations in a clinical setting

Comparison of four dietary pattern indices in Australian baby boomers: Findings from the Busselton Healthy Ageing Study

The assessment of dietary patterns comprehensively represents the totality of the diet, an important risk factor for many chronic diseases. This study aimed to characterise and compare four dietary pattern indices in middle-aged Australian adults. In 3458 participants (55 % female) from the Busselton Healthy Ageing Study (Phase Two), a validated food frequency questionnaire was used to capture dietary data between 2016 and 2022. Four dietary patterns [Australian Dietary Guideline Index 2013 (DGI-2013); the Mediterranean Diet Index (MedDiet); the Literature-based Mediterranean Diet Index (Lit-MedDiet); and the EAT-Lancet Index], were calculated and compared by measuring total and sub-component scores, and concordance (ρc). Cross-sectional associations between the dietary indices and demographic, lifestyle, and medical conditions were modelled with linear regression and restricted cubic splines. Participants had the highest standardised scores for the DGI-2013 followed by the EAT-Lancet Index and the MedDiet, with the lowest standardised scores observed for the Lit-MedDiet. The DGI-2013 had the lowest agreement with the other scores (ρc ≤ 0.47). These findings indicate that the diets included in this Australian cohort align more closely with the Australian Dietary Guidelines than with the other international dietary patterns, likely due to the wide variation of individual food group weightings in the construction of these indices

Decision-making, attitudes, and understanding among patients and relatives invited to undergo genome sequencing in the 100,000 Genomes Project: A multisite survey study

PURPOSE: The purpose of this study was to assess decisions, attitudes, and understanding of participants (patients, parents, relatives) having genome sequencing for rare disease diagnosis. METHODS: This study involved a cross-sectional observational survey with participants in the 100,000 Genomes Project. RESULTS: Survey response rate was 51% (504/978). Most participants self-reported that they had decided to undergo genome sequencing (94%) and that this was an informed decision (84%) with low decisional conflict (95%). Most self-reported that they had chosen to receive additional findings (88%) and that this was an informed decision (89%) with low decisional conflict (95%). Participants were motivated more by the desire to help others via research than by the belief it would help them obtain a diagnosis (Z = 14.23, P = 5.75 × 10-46), although both motivations were high. Concerns were relatively few but, where expressed, were more about the potential psychological impact of results than data sharing/access (Z = 9.61, P = 7.65 × 10-22). Concerns were higher among male, Asian or Asian British, and more religious participants. General and context-specific understanding of genome sequencing were both moderately high (means 5.2/9.0 and 22.5/28.0, respectively). CONCLUSION: These findings are useful to inform consent guidelines and clinical implementation of genome sequencing

Incontinence-associated dermatitis: reducing adverse events

Incontinence-associated dermatitis (IAD) is a common problem in patients with faecal and/or urinary incontinence. Urine alters the normal skin flora and increases permeability of the stratum corneum and faecal enzymes on the skin contribute to skin damage. Faecal bacteria can then penetrate the skin, increasing the risk of secondary infection. However, IAD can be prevented and healed with timely and appropriate skin cleansing and skin protection. This includes appropriate use of containment devices. This article also looks at HARTMANN incontinence pads that have been developed to absorb the fluids that cause IAD and maintain the skin's acidic pH. The acidic pH of the skin contributes to its barrier function and defence against infection. Therefore, maintaining an acidic pH will help protect the skin from damage