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Il progetto, in cui l’Sgr di Cdp ha investito oltre 55 milioni, vede la partecipazione della tedesca Evotec e di Angelini Venture. Il Polo avrà una dotazione di 30 milioni.
Introduction
Developmental and epileptic encephalopathies (DEEs) are rare epilepsy conditions that collectively impact 1 in 2000 children. They are highly genetically heterogeneous, resulting in significant barriers to accurate and adequate information for caregivers. This can lead to increased distress and dissatisfaction with the healthcare system. To address this gap, we developed ‘GenE Compass’ to provide caregivers with the highest-quality possible, understandable and relevant information in response to specific questions about their child’s DEE. Using a mixed-method design, we will now pilot GenE Compass to evaluate the acceptability to caregivers and clinicians, feasibility and impact to caregivers.
Methods and analysis
We will recruit 88 caregivers (estimated final sample of 50 at follow-up) who have a child under 18 years of age with a suspected or confirmed DEE diagnosis. Following consent and a baseline questionnaire (questionnaire 1 (Q1)), participants will be able to submit questions to GenE Compass over a 3-month period. After 3 months, participants will complete a follow-up questionnaire (Q2) and an optional telephone interview to answer the research questions. Primary outcomes are acceptability of GenE Compass and feasibility of delivering the intervention (eg, cost of the intervention, number of questions submitted and time taken to respond to questions). Secondary outcomes include the impact of GenE Compass on caregivers’ quality of life, information searching behaviours, perceptions of their child’s illness and activation.
Ethics and discussion
The study protocol (V.2, dated 16 September 2021) has been approved by the Sydney Children’s Hospitals Network Human Research Ethics Committee (ETH11277). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be disseminated to all participants.
Trial registration number
ACTRN12621001544864.
Sfoltire ‘polifarmacie’. Si apre l’era della ‘de-prescrizione’
4 grant da 25 mila euro a giovani ricercatori
Sfoltire ‘polifarmacie’. Si apre era della ‘de-prescrizione’
Introduction
Dental decay is a major problem among Australian children. It can be prevented through good self-care and limiting sugar intake, but many parents/caregivers lack the skills and confidence to help their children adopt these practices. This trial will evaluate the efficacy of Healthy Habits Triple P – Oral health, a web-based online programme, in improving children’s oral health-related behaviours (toothbrushing, snacking practices and dental visits) and related parenting practices, thereby preventing dental caries.
Methods and analysis
This is a cluster, parallel-group, single-blinded, randomised controlled trial of an online intervention for parents/caregivers of children aged 2–6 years. From the City of Gold Coast (Australia), 18 childcare centres will be randomly selected, with equal numbers randomised into intervention and control arms. Intervention arm parents/caregivers will receive access to a web-based parenting intervention while those in the control arm will be directed to oral health-related information published by Australian oral health agencies. After the completion of the study, the Healthy Habits Triple P – Oral health intervention will be offered to parents/caregivers in the control arm. The primary outcome of this trial is toothbrushing frequency, which will be assessed via Bluetooth supported smart toothbrushes and parent/caregiver report. Data on other outcomes: parenting practices and child behaviour during toothbrushing, consumption of sugar rich foods and parents’ confidence in dealing with children’s demands for sugar rich food, and dental visiting practices, will be collected through a self-administered questionnaire at baseline (before randomisation), and 6 weeks (primary endpoint), 6 months and 12 months after randomisation. Data on dental caries will be collected at baseline, 12 and 18 months post-randomisation.
Ethics and dissemination
Ethical approval has been obtained from Human Research Ethics Committees of Griffith University (2020/700) and the University of Queensland (2020002839). Findings will be submitted for publication in leading international peer-reviewed journals.
Trial registration number
ACTRN12621000566831.
Objectives
To recontact biobank participants and collect cognitive, behavioural and lifestyle information via a secure online platform.
Design
Biobank-based recontacting pilot study.
Setting
Three Finnish biobanks (Helsinki, Auria, Tampere) recruiting participants from February 2021 to July 2021.
Participants
All eligible invitees were enrolled in FinnGen by their biobanks (Helsinki, Auria, Tampere), had available genetic data and were >18 years old. Individuals with severe neuropsychiatric disease or cognitive or physical disabilities were excluded. Lastly, 5995 participants were selected based on their polygenic score for cognitive abilities and invited to the study. Among invitees, 1115 had successfully participated and completed the study questionnaire(s).
Outcome measures
The primary outcome was the participation rate among study invitees. Secondary outcomes included questionnaire completion rate, quality of data collected and comparison of participation rate boosting strategies.
Results
The overall participation rate was 18.6% among all invitees and 23.1% among individuals aged 18–69. A second reminder letter yielded an additional 9.7% participation rate in those who did not respond to the first invitation. Recontacting participants via an online healthcare portal yielded lower participation than recontacting via physical letter. The completion rate of the questionnaire and cognitive tests was high (92% and 85%, respectively), and measurements were overall reliable among participants. For example, the correlation (r) between self-reported body mass index and that collected by the biobanks was 0.92.
Conclusion
In summary, this pilot suggests that recontacting FinnGen participants with the goal to collect a wide range of cognitive, behavioural and lifestyle information without additional engagement results in a low participation rate, but with reliable data. We suggest that such information be collected at enrolment, if possible, rather than via post hoc recontacting.
Indipendentemente da età e ruolo professionale svolto, la quasi totalità degli intervistati (89,60%) ritiene che sia opportuno e improcrastinabile equiparare ad altre realtà internazionali la formazione dei medici di medicina generale tramite l’istituzione di vere e proprie scuole di specializzazione universitaria in medicina generale
“Siamo d’accordo con il Presidente dell’Inail, Franco Bettoni, sulla necessità che l’infortunio sul lavoro debba essere ampliato ai medici di medicina generale e liberi professionisti e ad altre categorie di lavoratori attualmente senza questa tutela”. Così Pina Onotri, Segretario Generale del Sindacato Medici Italiani (SMI), in risposta a quanto dichiarato oggi dal presidente dell’Istituto nazionale per l’assicurazione contro gli infortuni sul lavoro
Objective
Resident duty hour (RDH) restrictions in postgraduate medical education is a controversial yet important topic for study. There is limited literature on authentic trainee perceptions surrounding RDH restrictions to inform evaluation and future planning. Online forums are a widely accessible, yet underused resource, for insight into trainee perceptions. Our objective was to qualitatively assess trainee perceptions of RDH restrictions on online discussion forums.
Setting
Online discussion forums; Premed101 (Canadian forum) and Student Doctor Network (SDN) (American forum).
Participants
6630 posts from 161 discussion threads; comprising 429 posts in 14 threads from Premed101 and 6201 posts in 147 threads from SDN. Posters included medical students, residents and attending physicians.
Design
Data were analysed inductively and iteratively to create themes and subthemes. Cocoding, consensus-based decision making and an audit trail were used to ensure trustworthiness.
Results
Key findings distilled across both forums include: the relationship between hours worked and competence, the inapplicability of blanket RDH restrictions to all specialties and the inter-relationship between fatigue and patient safety. Discussions of RDH restriction compliance and perceived consequence for the reporting of violations were also featured on the American SDN forum.
Conclusions
The findings of this study reveal multiple themes pertinent to the implementation and revision of RDH restrictions. The most prominent theme was the inapplicability of blanket restrictions on duty hours theme due to the diversity of training needs across specialties and the environmental context of training programmes. Other discussions included the inter-relationship of patient safety and resident competence with duty hours. Lastly, concerns regarding the lack of transparency and psychological safety surrounding RDH violations, were discussed.
Annals of Internal Medicine, Volume 175, Issue 10, Page 1345-1355, October 2022.
Annals of Internal Medicine, Volume 175, Issue 10, Page I-32, October 2022.
Introduction
Disordered eating behaviours (DEB) and eating disorders (ED) are among the most common mental health comorbidities of type 1 diabetes. However, research on diabetes-specific risk and protective factors is limited. To this end, comprehensive characterisations of DEB and ED in type 1 diabetes, as well as longitudinal research on the course of DEB and ED, are needed to gain more insight. The ‘Disordered eating behaviours and eating disorders in diabetes type I’ (DEBBI) study aims to describe DEB/ED and their correlates in people with type 1 diabetes, to identify key diabetes-specific, psychosocial risk and protective factors, and to describe the course of DEB over time.
Methods and analysis
The DEBBI study is a longitudinal online survey with follow-up assessments after 6, 12 and 18 months, targeted at adults who have been diagnosed with type 1 diabetes for at least 12 months. The survey covers data on diabetes diagnosis and self-management (eg, diabetes treatment and complications), lifestyle (eg, eating habits, physical activity), psychosocial well-being (eg, anxiety, depressive symptoms) and demographic and medical information. It includes validated instruments and self-generated items. One key aspect of the data analysis will be latent profile analyses to determine latent subtypes of DEB manifestation in people with type 1 diabetes and their courses over time, including data on the clinical picture and symptoms, behaviours and diabetes-specific complications.
Ethics and dissemination
The study protocol was approved by the Ethics Committee of the State Medical Chamber of Rhineland-Palatine, Germany (ID 2021-16040). Participants give informed written consent before starting the survey. The DEBBI study will provide more clarity in the so far inconsistent empirical evidence base and will help to inform research on prevention and intervention strategies that are tailored to diabetes-specific needs.
Trial registration number
The study is registered with DRKS German Clinical Trials Register (DRKS00028833).
Objective
The aim of the present study is to describe a stepwise approach to study which contextual factors might moderate the effect of healthcare interventions and to test feasibility of this approach within the D-SCOPE project.
Design
Exploratory case study.
Setting
In the D-SCOPE project, a complex intervention by means of home visits was set up to improve access to tailored care in three municipalities (Ghent, Knokke-Heist and Tienen).
Methods
One designed and tested an approach including five steps: (1) a theoretical/conceptual discussion of relevant contextual factor domains was held; (2) a search was done to find appropriate web-based public datasets which covered these topics with standardised information; (3) a list of all identified contextual factors was made (inventory); (4) to reduce the long list of contextual factors, a concise list of most relevant contextual factors was developed based on the opinion of two independent reviewers and (5) a nominal grouping technique (NGT) was applied.
Results
Three public web-based datasets were found resulting in an inventory of 157 contextual factors. After the selection by two independent reviewers, 41 contextual factors were left over and presented in a NGT which selected 10 contextual factors. The NGT included seven researchers, all familiar with the D-SCOPE intervention, with various educational backgrounds and expertise and lasted approximately 1 hour.
Conclusion
The present study shows that a five-step approach is feasible to determine relevant contextual factors that might affect the results of an intervention study. Such information may be used to correct for in the statistical analyses and for interpretation of the outcomes of intervention studies.
NCT03168204
Objective
To examine the impact of the government communicating uncertainties relating to COVID-19 vaccine effectiveness on vaccination intention and trust after people are exposed to conflicting information.
Design
Experimental design where participants were randomly allocated to one of two groups.
Setting
Online.
Participants
328 adults from a UK research panel.
Intervention
Participants received either certain or uncertain communications from a government representative about COVID-19 vaccine effectiveness, before receiving conflicting information about effectiveness.
Main outcome measures
Vaccination intention and trust in government.
Results
Compared with those who received the uncertain announcement from the government, participants who received the certain announcement reported a greater loss of vaccination intention (d=0.34, 95% CI (0.12 to 0.56), p=0.002) and trust (d=0.34, 95% CI (0.12 to 0.56), p=0.002) after receiving conflicting information.
Conclusions
Communicating with certainty about COVID-19 vaccines reduces vaccination intention and trust if conflicting information arises, whereas communicating uncertainties can protect people from the negative impact of exposure to conflicting information. There are likely to be other factors affecting vaccine intentions, which we do not account for in this study.
Trial registration number
Open Science Framework: https://osf.io/c73px/.
