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1.
Wellcome Open Res ; 6: 176, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-38406227

RESUMO

CovidLife is a longitudinal observational study designed to investigate the impact of the COVID-19 pandemic on mental health, well-being and behaviour in adults living in the UK. In total, 18,518 participants (mean age = 56.43, SD = 14.35) completed the first CovidLife questionnaire (CovidLife1) between April and June 2020. To date, participants have completed two follow-up assessments. CovidLife2 took place between July and August 2020 (n = 11,319), and CovidLife3 took place in February 2021 (n = 10,386). A range of social and psychological measures were administered at each wave including assessments of anxiety, depression, well-being, loneliness and isolation. Information on sociodemographic, health, and economic circumstances was also collected. Questions also assessed information on COVID-19 infections and symptoms, compliance to COVID-19 restrictions, and opinions on the UK and Scottish Governments' handling of the pandemic. CovidLife includes a subsample of 4,847 participants from the Generation Scotland cohort (N~24,000, collected 2006-2011); a well-characterised cohort of families in Scotland with pre-pandemic data on mental health, physical health, lifestyle, and socioeconomic factors, along with biochemical and genomic data derived from biological samples. These participants also consented to their study data being linked to Scottish health records. CovidLife and Generation Scotland data can be accessed and used by external researchers following approval from the Generation Scotland Access Committee. CovidLife can be used to investigate mental health, well-being and behaviour during COVID-19; how these vary according to sociodemographic, health and economic circumstances; and how these change over time. The Generation Scotland subsample with pre-pandemic data and linkage to health records can be used to investigate the predictors of health and well-being during COVID-19 and the future health consequences of the COVID-19 pandemic.

2.
J Med Ethics ; 2020 Oct 06.
Artigo em Inglês | MEDLINE | ID: mdl-33023977

RESUMO

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.

3.
Nat Commun ; 11(1): 2408, 2020 05 15.
Artigo em Inglês | MEDLINE | ID: mdl-32415113

RESUMO

Uveal melanoma (UM) is the most common intraocular tumour in adults and despite surgical or radiation treatment of primary tumours, ~50% of patients progress to metastatic disease. Therapeutic options for metastatic UM are limited, with clinical trials having little impact. Here we perform whole-genome sequencing (WGS) of 103 UM from all sites of the uveal tract (choroid, ciliary body, iris). While most UM have low tumour mutation burden (TMB), two subsets with high TMB are seen; one driven by germline MBD4 mutation, and another by ultraviolet radiation (UVR) exposure, which is restricted to iris UM. All but one tumour have a known UM driver gene mutation (GNAQ, GNA11, BAP1, PLCB4, CYSLTR2, SF3B1, EIF1AX). We identify three other significantly mutated genes (TP53, RPL5 and CENPE).


Assuntos
Neoplasias da Íris/genética , Neoplasias da Íris/patologia , Melanoma/genética , Melanoma/patologia , Neoplasias Uveais/genética , Neoplasias Uveais/patologia , Linhagem Celular Tumoral , Aberrações Cromossômicas , Biologia Computacional , Análise Mutacional de DNA , Progressão da Doença , Intervalo Livre de Doença , Dosagem de Genes , Genoma Humano , Genômica , Humanos , Estimativa de Kaplan-Meier , Cadeias de Markov , Melanócitos/metabolismo , Mutação , Fenótipo , Prognóstico , Proteína Supressora de Tumor p53/genética , Raios Ultravioleta
4.
Am J Public Health ; 97(3): 456-63, 2007 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-17267714

RESUMO

OBJECTIVES: Our goal was to gain an understanding of the extent to which environmental public health tracking (EPHT) has progressed since the release of the 2000 Pew Environmental Health Commission report examining the nation's EPHT infrastructure. METHODS: As a follow-up to the Pew Commission report, we conducted a telephone survey of state practitioners in an effort to assess EPHT trends and changes in state-level capacities and activities over the past several years. RESULTS: We found that new and enhanced federal-state partnerships; improved surveillance, data analysis, and communication capacities; and enhanced support of tracking personnel have provided a foundation for progress in the area of EPHT. Also, the Centers for Disease Control and Prevention's support of EPHT has strengthened the national environmental public health infrastructure and capacity to track environmental hazards, exposures, and health. CONCLUSIONS: Improved funding, data access, and translation of data to prevention activities are critical to sustaining progress in EPHT and developing the evidence base necessary for assessing the longer-term impacts and efficacy of EPHT and related environmental health improvements.


Assuntos
Meio Ambiente , Exposição Ambiental , Governo Federal , Órgãos Governamentais/tendências , Relações Interinstitucionais , Vigilância da População/métodos , Administração em Saúde Pública/tendências , Governo Estadual , Comitês Consultivos , Desastres , Exposição Ambiental/análise , Exposição Ambiental/estatística & dados numéricos , Monitoramento Ambiental/métodos , Monitoramento Ambiental/normas , Financiamento Governamental/tendências , Seguimentos , Sistemas de Informação Geográfica , Órgãos Governamentais/organização & administração , Pesquisas sobre Atenção à Saúde , Prioridades em Saúde , Humanos , Administração em Saúde Pública/normas , Informática em Saúde Pública , Terrorismo , Estados Unidos
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