Gene expression analysis of breast tumours from dormant and acquired resistant patients

Sequential patient-matched samples treated with extended neoadjuvant therapy were studied. Long-term treatment (letrozole) induced changes in dormant and resistant patients were determined. Samples were classified as pre-treatment (timepoint1, 120 days)

Theirworld Edinburgh Birth Cohort (TEBC) and PREterm birth as a determinant of Neurodevelopment and COGnition in children: mechanisms and causal evidence (PRENCOG)

TEBC is a prospective, longitudinal cohort of preterm and term infants which aims to investigate neuroanatomic variation and adverse outcomes associated with preterm birth, using brain using MRI linked to biosamples and clinical, environmental and neuropsychological data. PRENCOG is a programme of research with the overarching aim to determine the biological, psychosocial and socioeconomic preterm birth-associated risk factors (PTB-RFs) that lead to adverse neurodevelopmental, cognitive, and educational outcomes in children born preterm and to identify the neuroendocrine and epigenetic axes that embed these risks in brain development. The programme is organised in 4 work packages: WP1 is a national population-based cohort study; WP2 is an exposure-based short-term cohort study; WP3 is an exposure-based longitudinal cohort study (TEBC); WP4 is a participatory project. This vault contains datasets linked to published manuscripts using TEBC and PRENCOG data.Boardman JP "Theirworld Edinburgh Birth Cohort - Publication Datasets" Edinburgh DataVault 202

Gabapentin for the Management of Chronic Pelvic Pain in Women (GaPP1)

This is a pilot study looking at the effect of Gabapentin in women with chronic pelvic pain. Participants were assigned at random to the placebo or the drug group. The design follows procedure of double blinding, i.e. neither patients, nor people involved in data collection or analysis knew the participants group. There was two sessions on thermal stimulation, in which a thermal probe was applied to the abdomen or to the hand. After each stimulation are two rating scales were presentated in succession. In a third session, punctuations were applied to he hand and fMRI scans conducted. The full study (not fMRI) report has been published here: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0153037 .Horne, Andrew; Vincent, Katy; Pernet, Cyril. (2018). Gabapentin for the Management of Chronic Pelvic Pain in Women (GaPP1), [dataset]. University of Edinburgh. College of Medicine & Veterinary Medicine. Clinical Sciences. Edinburgh Imaging. http://dx.doi.org/10.7488/ds/2411

School staff’s, healthcare professionals’ and policymakers’ views of asthma and school-based asthma programme for primary school children: A qualitative study in Malaysia

21 pdf files (de-identified transcripts and participants’ characteristics) ## Access ## This dataset is held in the Edinburgh DataVault, directly accessible only to authorised University of Edinburgh users. Academic researchers may request access, and will be required to sign a data sharing agreement.Asthma is the commonest non-communicable disease among children potentially requiring urgent treatment during school hours, an important exemplar for school-based programmes. We conducted a qualitative study aimed to explore the views of school staff, healthcare professionals and policymakers, about asthma and school asthma programmes for primary school children. Purposive sampling was used to obtain diverse views from stakeholders in the education and health sectors in Malaysia. We used piloted semi-structured topic guides to conduct focus groups and individual interviews and completed data collection until we reached data saturation. The focus groups and interviews were audio-recorded, transcribed verbatim and analysed using inductive thematic analysis. Fifty-two participants (40 school staff, 9 healthcare professionals and 3 policymakers) contributed to nine focus groups and eleven individual interviews. The data in the Datavault contains 20 de-identified original transcripts and one de-identified file containing the characteristics of participants. We translated Malay (source language) to English and provided both languages in the transcripts. From our analysis, we found that school staff had limited awareness of asthma and first-aid asthma treatments. There was no guidance on asthma management in government schools, and teachers were unclear about their role in school children’s health. These uncertainties led to delays in treating asthma symptoms/attacks, and participants suggested that an asthma education programme and a school plan would improve asthma care. Perceived challenges in conducting school health programmes included a busy school schedule and poor parental participation. A tailored asthma programme developed in partnership with schools and health services could facilitate adoption/ and implementation. In conclusion, identifying and addressing issues and challenges specific to the school and broader community would facilitate a school asthma programme in line with the WHO School Health Initiative. Clarity over national policy on the role and responsibilities of school staff could support implementation and guide appropriate and prompt response to asthma emergencies in schools

Stakeholders' views of asthma and school-based asthma programme for primary school children: A qualitative study in Malaysia

This is a qualitative study conducted among 52 stakeholders in the education and health sectors in Malaysia. We explored the views of school staff, healthcare professionals and policymakers, about asthma and school asthma programmes for primary school children to inform the development of a Culturally Tailored school-based intervention for Asthma in Malaysia (CuT-AsthMa) programme. The documents consist of the participant information sheet and consent form, the background questionnaire, topic guides and a coding tree. This study is to support part of the PhD work at the Usher Institute, the University of Edinburgh (PhD title: Culturally Tailored school-based intervention for Asthma in Malaysia (CuT-AsthMa)) Due to the sensitivity of the data and to protect the confidentiality of the participants involved in this study, the raw data will be deposited in DataVault at the University of Edinburgh.Ramdzan, Kamilla; Pinnock, Hilary; Khoo, Ee Ming; Cunningham, Steve; Liew, Su May. (2021). Stakeholders' views of asthma and school-based asthma programme for primary school children: A qualitative study in Malaysia, [dataset]. University of Edinburgh. Usher University. https://doi.org/10.7488/ds/3004

Bayer study 15791 - Mechanism of action (MoA) study 3month oral dosing of Vilaprisan or Ulipristal in patients with uterine fibroids scheduled for hysterectomy

Essential source documentation for the study

Epilepsy-related mortality during the COVID-19 pandemic: a nationwide study of routine Scottish data

Methods: This was a national, population-based, cross-sectional study of routinely-collected mortality and demographic data pertaining to March–August of 2020 (COVID-19 pandemic) compared to the corresponding periods in 2015–2019. ICD-10-coded causes of death of deceased people of any age were obtained from a national mortality registry of death certificates. The G40–41 ICD-10 codes for epilepsy were used to define epilepsy-related deaths, with or without a U07·1–07·2 ICD-10 code for COVID-19 listed as an additional cause. Deaths unrelated to epilepsy were defined as all remaining Scottish deaths without G40–41 ICD-10 codes listed as a cause. We assessed the number of epilepsy-related deaths in 2020 compared to mean year-to-year variation observed in 2015–2019 (overall, men, women). We assessed proportionate mortality and odds ratios (OR) for deaths with COVID-19 listed as the underlying cause in people with epilepsy-related deaths compared to in deaths unrelated to epilepsy, reporting 95% confidence intervals (95% CIs). Sheet 1 contains a key to the remaining dataset.Mbizvo, Gashirai K; Schnier, Christian; Ramsay, Julie; Duncan, Susan E; Chin, Richard FM. (2020). Epilepsy-related mortality during the COVID-19 pandemic: a nationwide study of routine Scottish data, 2015-2020 [dataset]. Muir Maxwell Epilepsy Centre

A Celebration of Scottish Health Cohort Studies: Participants' attitudes towards data research

BACKGROUND. The UK hosts many of the world’s longest running prospective longitudinal birth cohort studies. These projects make repeated observations of their participants and use this data to explore health outcomes and mortality. An alternative method for data collection is record linkage; the linking together of electronic health and administrative records. Applied nationally, this could provide unrivalled opportunities to follow a large number of people in perpetuity. However, public attitudes to the use of data and samples in research are currently unclear. Here we report on an event at which we collected attitudes towards recent opportunities and controversies within health data science. METHODS. The event was attended by ~250 individuals (cohort members and their guests), who had been invited through the offices of their participating cohort studies. Attendees heard talks describing key research results and participated in 15 multiple-choice questions using interactive voting pads. RESULTS. Our participants showed a high level of trust in researchers and doctors, but less trust in commercial companies. They supported the idea of researchers using information from both neonatal blood spots (Guthrie spots) and from health records. Participants said they would be willing to wear devices like a “fit-bit” and to undergo a brain scan that might predict later mental illness. However, they were less willing to change an aspect of their lifestyle or take a new drug for research purposes. They were very keen to encourage others to take part in research; whether that be offering the opportunity to pregnant mothers or indeed extending invitations to their own children and grandchildren CONCLUSIONS. Our participants were broadly supportive of research access to data and samples, albeit less supportive when commercial interests are involved. Public engagement events that facilitate two-way interactions can influence and support future research and public engagement efforts. Ethical permission for this work was granted by The Psychology Research Ethics Committee (PREC) at the University of Edinburgh (Ref No: 327-1718/3). No identifying data were collected from participating individuals. Videos are publicly available on the CCACE YouTube Channel: https://www.youtube.com/channel/UCaemWVOehYht6pylL9zq4nwBeange, Iona; McIntosh, Andrew; Kirkham, Elizabeth; Fletcher-Watson, Sue; Lawrie, Stephen; Batty, David; Boardman, James; Black, Corri; Porteous, David. (2019). A Celebration of Scottish Health Cohort Studies: Participants' attitudes towards data research, 2018 [dataset]. Division of Psychiatry. Centre for Clinical Brain Sciences. University of Edinburgh. https://doi.org/10.7488/ds/2728

STratifying Resilience and Depression Longitudinally (STRADL): A depression-focused investigation of Generation Scotland, using detailed clinical, cognitive, and neuroimaging assessments

STratifying Resilience and Depression Longitudinally (STRADL) is a population-based study built on the Generation Scotland: Scottish Family Health Study (GS:SFHS) resource. The aim of STRADL is to subtype major depressive disorder (MDD) on the basis of its aetiology, using detailed clinical, cognitive, and brain imaging assessments. The GS:SFHS cohort provides an important opportunity to study complex gene-environment interactions, incorporating linkage to existing datasets and inclusion of early-life variables for two longitudinal birth cohorts – the Walker birth cohort, and Aberdeen Children of the 1950s (ACONF). Access: This dataset is held in the Edinburgh DataVault. De-identified data from this study is available to researchers through the GS:SFHS Access Committee ([email protected]). External users may request access to a copy of the data by contacting the Generation Scotland Access Committee.Cohort basics: Participants who had already taken part in GS:SFHS between 2006-2011, and who were eligible for re-contact, were sent a postal invitation by the University of Dundee Health Informatics Centre. In Dundee (Tayside) recruitment targeted members of the Walker cohort, and in Aberdeen recruitment initially targeted members of ACONF. Recruitment has been completed and we consented and tested 1,188 participants (Aberdeen n = 582; Dundee n = 606) (Figure 1). Follow-up and attrition: Of the initial 24,096 participants in GS:SFHS, 21,525 remained eligible for follow-up in STRADL. We invited 5,649 potential participants to take part in the study, of which 1,645 responded positively; however, 170 declined once they were contacted by our research team or withdrew before consenting. Some questionnaire and cognitive data were first assessed at the GS:SFHS baseline assessment between 2006-2011, thus providing longitudinal measures of depression and resilience. Similarly, routine NHS data and early-life variables are linked to STRADL data, further providing opportunities for longitudinal analysis. Design and measures: Data collection in STRADL included the following: socio-economic and lifestyle variables; physical measures; questionnaire data that assessed resilience, early-life adversity, personality, psychological health, and lifetime history of mood disorder; laboratory samples for repeat genetic analysis and additional genomic analyses; cognitive tests; and structural and functional brain magnetic resonance imaging. Unique features: STRADL data have been robustly collected on a wide range of key phenotypes that allow epidemiological study of depression and resilience in a population-based cohort. The MRI and detailed depression phenotyping protocol described here was cross-sectional; however, STRADL provides longitudinal measures of cognition, personality, and psychological health. This is because many of the cognitive tests applied in STRADL are the same as those used at the GS:SFHS baseline assessment, as well as some personality and mood measures. Similarly, routine NHS data, and ACONF and Walker cohorts’ early-life variables, is linked to STRADL data, further providing opportunities for longitudinal predictors on depression and resilience.Habota, T et al. "Cohort Profile: STratifying Resilience and Depression Longitudinally (STRADL): A depression-focused investigation of Generation Scotland, using detailed clinical, cognitive, and neuroimaging assessments", (2019)Edinburgh DataVault. https://doi.org/10.7488/8f68f1ae-0329-4b73-b189-c7288ea844d

Developing and evaluating interventions at patient and practice level to improve asthma care

The data collected was used to establish an asthma cohort of adults and children aged 5 and above at six public health clinics in Klang District, Selangor. This was intended to examine asthma status, healthcare use and cost related to asthma care at the patient and practice levels