Explanipedia

Co-developing resources for better public understanding of Longitudinal Population Study Data and the Law Open

Kirsteen Campbell, Sarah Chave, Rosie Hill, M. Docherty, Michael D. Gregg , et al. · 2025

IntroductionThe legal basis for using participants' data in Longitudinal Population Studies (LPS) is complex. Laws of particular relevance are (1) UK data protection legislation, including Data Protection Act 2018 and UK General Data Prote…

EXTH-76. Validating the Eph family of receptors as therapeutic targets using patient-derived Glioblastoma organoids Open

Niclas Skarne, Rochelle C. J. D’Souza, José Paulo Martins, Onkar Mulay, Lachlan Harris , et al. · 2025

The failure of current glioblastoma therapies is largely attributed to an incomplete understanding of the tumor’s inherent plasticity, a key driver of treatment resistance. Better preclinical models that possess intra-tumoral heterogeneity…

Using digital information to enrich longitudinal population study data at the UK Longitudinal Linkage Collaboration Open

Abigail Hill, Andy Boyd, Richard Thomas, Katherine Evans, Rachel Calkin · 2025

Introduction & BackgroundUK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment (TRE) for the longitudinal research community. UK LLC works in collaboration with many of the UK’s most established Longit…

Embedding Public Voices in Data Governance: Insights from the GUARDS Principles Consultation Open

Ester Bellavia, Rachel Brophy, Sonia Patton, Doreen Tembo, Cassie Smith , et al. · 2025

ObjectivesThis project explored public perspectives on the GUARDS Principles, an overarching governance framework for the population data research community, which builds on existing good practice guidance. It evaluated the principles’ cla…

Strategies for ascertaining timing of address changes in administrative data Open

Joseph C. Lam, Mario Cortina‐Borja, Peter Christen, Richard Gough Thomas, Robert W Aldridge , et al. · 2025

There is growing interest in incorporating the timing of place-based exposures into administrative health data to examine the impacts of the home environment on population health. We compared the accuracy of three methods for estimating th…

Co-development and Adoption of Transparency in Data Access Standards: Process, Implementation, and Impact Open

Ester Bellavia, Alan Holcroft, Yemi Macaulay, Doreen Tembo, Cassie Smith , et al. · 2025

ObjectivesThis initiative aimed to enhance transparency in health data access processes by co-developing and implementing clear standards. The goal was to improve public trust and understanding, streamline governance, and promote meaningfu…

Improving transparency in data access processes: Developing best practice standards and promoting system-wide change through a competitive funding call Open

Yemi Macaulay, Ester Bellavia, Rachel Brophy, Angela Coulter, Ben Glampson , et al. · 2025

IntroductionTransparency in the use of data for research benefits the public and researchers by fostering trust and enabling efficient data sharing. Public support for access to their data for research depends on robust data security, the …

Linking Digital Footprint Data into Longitudinal Population Studies Open

Romana Burgess, Andy Boyd, Oliver S. P. Davis, Louise A C Millard, Mark Mummé , et al. · 2025

BackgroundLinking digital footprint data into longitudinal population studies (LPS) presents an opportunity to enrich our understanding of how digitally captured behaviours relate to health traits and disease. However, this linkage introdu…

Conversational Assistants to support Heart Failure Patients: comparing a Neurosymbolic Architecture with ChatGPT Open

Anuja Tayal, Devika Salunke, Barbara Di Eugenio, Paula Allen‐Meares, Eulalia P Abril , et al. · 2025

Conversational assistants are becoming more and more popular, including in healthcare, partly because of the availability and capabilities of Large Language Models. There is a need for controlled, probing evaluations with real stakeholders…

Associations between different measures of SARS-CoV-2 infection status and subsequent economic inactivity: A pooled analysis of five longitudinal surveys linked to healthcare records Open

Richard Shaw, Olivia KL Hamilton, Rebecca Rhead, Richard J. Silverwood, Jacques Wels , et al. · 2025

Introduction Following the acute phase of the COVID-19 pandemic, a record number of people became economically inactive in the UK. We investigated the association between coronavirus infection and subsequent economic inactivity among peopl…

A school-based intervention to improve mental health outcomes for children with cerebral visual impairment (CVI): feasibility cluster randomised trial Open

Cathy Williams, Anna Pease, Trudy Goodenough, Katie Breheny, Beverly A. Shirkey , et al. · 2025

Background Cerebral visual impairment (CVI) refers to brain-related vision difficulties, which are often undiagnosed and may lead to poor mental health outcomes. We have developed an intervention to improve mental health outcomes for affec…

UK Longitudinal Linkage Collaboration (UK LLC): The National Trusted Research Environment for Longitudinal Research Open

Andy Boyd, Katharine Evans, Emma L. Turner, Robin Flaig, Jacqui Oakley , et al. · 2025

IntroductionThe UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment (TRE) for the UK's longitudinal research community, supporting the UK's unparalleled collection of Longitudinal Population Studies …

Linking Digital Footprint Data into Longitudinal Population Studies Open

Romana Burgess, Andy Boyd, Oliver S. P. Davis, Louise A C Millard, Mark Mummé , et al. · 2024

Background: Linking digital footprint data into longitudinal population studies (LPS) presents an opportunity to enrich our understanding of how digitally captured behaviours relate to health traits and disease. However, this linkage intro…

Linking Digital Footprint Data into Longitudinal Population Studies Open

Romana Burgess, Andy Boyd, Oliver S. P. Davis, Louise A C Millard, Mark Mummé , et al. · 2024

Background: Linking digital footprint data into longitudinal population studies (LPS) presents an opportunity to enrich our understanding of how digitally captured behaviours relate to health traits and disease. However, this linkage intro…

Association of home and neighbourhood conditions with anxiety and depression symptoms during the COVID-19 lockdown: Findings from the ALSPAC cohort Open

Connor Pinkney, James B. Kirkbride, Andy Boyd, Richard Thomas, Stanley Zammit , et al. · 2024

Background The first COVID-19 lockdown in the UK entailed widespread social restrictions, including instructions to stay at home at all times. This created a natural quasi-experiment, during which time home and neighbourhood conditions may…

Twitter data as a linked digital phenotype in the Avon Longitudinal Study of Parents and Children Open

Nina H. Di Cara, Daniel Joinson, Mark Mummé, Alastair R. Tanner, Valerio Maggio , et al. · 2024

This data note describes the collection and linkage of participants' Twitter data as a digital phenotype in the Avon Longitudinal Study of Parents and Children (ALSPAC) multi-generational birth cohort study. Twitter (renamed X in 2023) is …

Corrigendum: Maternal smoking during pregnancy and offspring risk of intellectual disability: a UK-based cohort study Open

Paul Madley‐Dowd, Richard Thomas, Andy Boyd, Stanley Zammit, Jon Heron , et al. · 2024

[This corrects the article DOI: 10.3389/fpsyt.2024.1352077.].

A protocol for linking participants’ retailer ‘loyalty card’ records into the Avon Longitudinal Study of Parents and Children (ALSPAC) Open

Anya Skatova, Andy Boyd · 2024

Longitudinal population studies (LPS) have a long history of providing insights into how individual consumption patterns and other lifestyle choices affect health and socio-economic outcomes. LPS typically operate as research databanks, in…

EphA2 regulates vascular permeability and prostate cancer metastasis via modulation of cell junction protein phosphorylation Open

Carolin Offenhäuser, Keyur A. Dave, Kirrilee Beckett, Fiona Smith, Buddhika A. Jayakody , et al. · 2024

Prostate cancer morbidity and mortality demonstrate a need for more effective targeted therapies. One potential target is EphA2, although paradoxically, pro- and anti-oncogenic effects have been shown to be mediated by EphA2. We demonstrat…

End user experience of a widely used artificial intelligence based sepsis system Open

Ayomide Owoyemi, Ebere Okpara, Megan E. Salwei, Andy Boyd · 2024

Objectives Research on the Epic Sepsis System (ESS) has predominantly focused on technical accuracy, neglecting the user experience of healthcare professionals. Understanding these experiences is crucial for the design of Artificial Intell…

Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility Open

Sarah Harding, Beverley Samways, Amy Dillon, Sandra Butcher, Andy Boyd , et al. · 2024

IntroductionFetal Alcohol Spectrum Disorder (FASD) is one of the leading non-genetic causes of developmental disability worldwide and is thought to be particularly common in the UK. Despite this, there is a lack of data on FASD in the UK. …

Generating synthetic identifiers to support development and evaluation of data linkage methods Open

Joseph Lam, Andy Boyd, Robin Linacre, Ruth Blackburn, Katie Harron · 2024

We aimed to develop a framework for generating synthetic identifier datasets to support development and evaluation of data linkage methods. We evaluated whether replicating associations between attributes and identifiers improved the utili…

“Hiding in the Crowd”: defining conceptual models for privacy-preserving linkage of place-based and personal data for public benefit research. Open

Andy Boyd, Chris Dibben, Richard Fry, Pia Hardelid, Cassie Smith , et al. · 2024

ObjectiveTo address the challenge of linking identifiable but low-sensitivity place-based data with high-sensitivity, de-identified, health and socio-economic records. While also minimising the financial and carbon costs of computationally…

Towards standardised cross-sectoral agreements for data depositing and data access in Trusted Research Environments: streamlined contracting to advance public benefit research. Open

Rachel Brophy, Cassie Smith, Andy Boyd, Pan UK Data Governance Steering Group · 2024

Objective Trusted Research Environments (TREs) rely on Data Contributor Agreements (DCAs) and Data Access Agreements (DAAs) to bind organisations to terms and conditions in place to protect data. Our objective is to develop and drive adopt…

COVID-19 and Mental Illnesses in Vaccinated and Unvaccinated People Open

Venexia Walker, Praveetha Patalay, Jose Ignacio Cuitun Coronado, Rachel Denholm, Harriet Forbes , et al. · 2024

Importance Associations have been found between COVID-19 and subsequent mental illness in both hospital- and population-based studies. However, evidence regarding which mental illnesses are associated with COVID-19 by vaccination status in…

Mapping associations of polygenic scores with autistic and ADHD traits in a single city region Open

Zoe E. Reed, Richard Thomas, Andy Boyd, Gareth J Griffith, Tim Morris , et al. · 2024

Background The genetic and environmental aetiology of autistic and Attention Deficit Hyperactivity Disorder (ADHD) traits is known to vary spatially, but does this translate into variation in the association of specific common genetic vari…

Association of home and neighbourhood conditions with anxiety and depression symptoms during the COVID-19 lockdown: Findings from the ALSPAC study Open

Connor Pinkney, James B. Kirkbride, Andy Boyd, Stanley Zammit, Joanne B. Newbury · 2024

Background The first COVID-19 lockdown in the UK was initially hailed as a great leveller. However, given that people were restricted to their homes and immediate neighbourhoods, there were stark inequalities in how different people experi…

Association of home and neighbourhood conditions with anxiety and depression symptoms during the COVID-19 lockdown: Findings from the ALSPAC study Open

Connor Pinkney, James B. Kirkbride, Andy Boyd, Stanley Zammit, Joanne B. Newbury · 2024

BackgroundThe first COVID-19 lockdown in the UK was initially hailed as a great leveller. However, given that people were restricted to their homes and immediate neighbourhoods, there were stark inequalities in how different people experie…

Incidence of diabetes after SARS-CoV-2 infection in England and the implications of COVID-19 vaccination: a retrospective cohort study of 16 million people Open

Kurt Taylor, Sophie V. Eastwood, Venexia Walker, Geneviève Cézard, Rochelle Knight , et al. · 2024

UK National Institute for Health and Care Research, UK Research and Innovation (UKRI) Medical Research Council, UKRI Engineering and Physical Sciences Research Council, Health Data Research UK, Diabetes UK, British Heart Foundation, and th…

Generating synthetic identifiers to support development and evaluation of data linkage methods Open

Joseph Lam, Andy Boyd, Robin Linacre, Ruth Blackburn, Katie Harron · 2024

IntroductionCareful development and evaluation of data linkage methods is limited by researcher access to personal identifiers. One solution is to generate synthetic identifiers, which do not pose equivalent privacy concerns, but can form …

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