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Introduction Fetal 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. Objective To conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for FASD in the UK. Methods We consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N\,$=$\,5; one for caregivers of people with FASD (N=7), 1:1/small-team video calls/email communication with clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N\,$=$\,17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities. Results Our tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD leading to better support; new insights into clinical profiles leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses. Conclusions Multi-method and multidisciplinary public and professional involvement activities demonstrated support for a national linked database for FASD in the UK. Flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.

Objectives To conduct public engagement work to establish the views of key stakeholders on the feasibility, acceptability, key purposes, and data structure of the first national linked longitudinal research database for fetal alcohol spectrum disorder (FASD) in the UK. Methods We conducted stakeholder mapping and identified contacts through collaborator networks and online searches. We consulted with stakeholders using a range of formats, including: online focus groups (one for adults with FASD [and their supporters] N=5; one for guardians of people with FASD N=7), 1:1/small-team video calls and email communication with clinicians, data providers, policy-makers, data-governance experts, third-sector representatives and researchers [N=~85]), and one hybrid workshop (N=16 [N=10 in-person, 6 online attendees; 15 clinical and one third-sector]). Consultations included discussions on data sharing, harmonisation, perceived benefits, and challenges of a national linked database for FASD. We analysed consultation transcripts and notes using thematic analysis. Results Our tailored, multi-method approach resulted in high levels of engagement with diverse stakeholders. Overall, stakeholders expressed strong support for a national linked database for FASD. For people living with FASD and third-sector representatives, the main perceived benefit was the potential for increased understanding, awareness, and support for FASD. Clinicians reported that a national database could provide new insights into FASD profiles, supporting more efficient diagnosis. Researchers highlighted potential for increased knowledge of FASD epidemiology and impacts. Policy-makers noted its clear alignment with contemporary FASD and data transformation policies. Common concerns were around privacy and data-sharing, particularly the tension between public good and disclosure risks if sample numbers were low. Clinicians expressed the importance of retaining space for clinical judgement and flexibility alongside the potential insights gained from quantitative analysis of data. Conclusion Multi-method and multidisciplinary stakeholder engagement demonstrated the feasibility and acceptability of establishing the first UK national linked database for FASD. Perceived benefits and concerns varied by stakeholder group, demonstrating that flexible, diverse, embedded stakeholder collaboration will be essential as we seek to establish this database.

IntroductionPlace-based public health evaluations are increasingly making use of natural experiments. This scoping review aimed to provide an overview of the design and use of natural experiment evaluations (NEEs), and an assessment of the plausibility of the as-if randomization assumption.MethodsA systematic search of three bibliographic databases (Pubmed, Web of Science and Ovid-Medline) was conducted in January 2020 to capture publications that reported a natural experiment of a place-based public health intervention or outcome. For each, study design elements were extracted. An additional evaluation of as-if randomization was conducted by 12 of this paper's authors who evaluated the same set of 20 randomly selected studies and assessed ‘as-if ' randomization for each.Results366 NEE studies of place-based public health interventions were identified. The most commonly used NEE approach was a Difference-in-Differences study design (25%), followed by before-after studies (23%) and regression analysis studies. 42% of NEEs had likely or probable as-if randomization of exposure (the intervention), while for 25% this was implausible. An inter-rater agreement exercise indicated poor reliability of as-if randomization assignment. Only about half of NEEs reported some form of sensitivity or falsification analysis to support inferences.ConclusionNEEs are conducted using many different designs and statistical methods and encompass various definitions of a natural experiment, while it is questionable whether all evaluations reported as natural experiments should be considered as such. The likelihood of as-if randomization should be specifically reported, and primary analyses should be supported by sensitivity analyses and/or falsification tests. Transparent reporting of NEE designs and evaluation methods will contribute to the optimum use of place-based NEEs.

This data note describes a new resource for crime-related research: the Avon Longitudinal Study of Parents and Children (ALSPAC) linked to regional police records. The police data were provided by Avon & Somerset Police (A&SP), whose area of responsibility contains the ALSPAC recruitment area. In total, ALSPAC had permission to link to crime records for 12,662 of the ‘study children’ (now adults, who were born in the early 1990s). The linkage took place in two stages: Stage 1 involved the ALSPAC Data Linkage Team establishing the linkage using personal identifiers common to both the ALSPAC participant database and A&SP records using deterministic and probabilistic methods. Stage 2 involved A&SP extracting attribute data on the matched individuals, removing personal identifiers and securely sharing the de-identified records with ALSPAC. The police data extraction took place in July 2021, when the participants were in their late 20s/early 30s. This data note contains details on the resulting linked police records available. In brief, electronic police records were available from 2007 onwards. In total, 1757 participants (14%) linked to at least one police record for a charge, offence ‘taken into consideration’, caution, or another out of court disposal. Linked participants had a total of 6413 records relating to 6283 offences. Almost three quarters of the linked participants were male. The most common offence types were violence against the person (22% of records), drug offences (19%), theft (17%) and public order offences (11%). This data note also details important issues that researchers using the local police data should be aware of, including the importance of defining an appropriate denominator, completeness, and biases affecting police records.

Abstract Aims Heart failure in constrictive pericarditis (CP) is attributed to impaired biventricular diastolic filling. However, diseases that cause CP due to myocardial infiltration and fibrosis can also impair biventricular systolic function (sf) and contribute to heart failure. This study of patients with CP examined biventricular sf and the effect of myocardial infiltration by pericardial diseases and the resulting fibrosis on ventricular sf. Methods and results Histopathologic examinations of right ventricular (RV) and left ventricular (LV) myocardia and pericardia were performed on three autopsied hearts of patients with pericardial diseases. Additionally, in 40 adults with clinical heart failure and 40 healthy adults (controls), sf of both ventricles was examined by echocardiography, including strain measurements, and biventricular diastolic filling and pulmonary artery pressures were assessed by cardiac catheterization. Cardiac histopathology indicated thickening of the pericardium with fibrosis, disease infiltrating the myocardium, greater infiltration of the RV than the LV, and an association of pericardial thickness with myocardial infiltrations. Functional analysis indicated that RVsf was impaired on all echo indices, including strain measurement, but LVsf was preserved. Conclusions Diseases causing CP are not restricted to the pericardium but also infiltrate the biventricular myocardium and affect the thin‐walled RV more than the thick‐walled LV, resulting in depressed RVsf. The present results help explain clinical heart failure in the presence of restricted diastolic filling in CP. Depression of RVsf due to progression of fibrosis in the RV myocardium may increase the risk of delayed pericardiectomy.