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total body bone density scan given to a participant at the focus group 9+.  

total body bone density scan given to a participant at the focus group 9+.  

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... While sample survey data have many advantages, including the richness of variables collected, they also have potential to suffer from high rates of non-response, smaller sample sizes, recall and self-reporting bias, and can be relatively costly to collect and to maintain high response rates. For example, English Avon Longitudinal Study of Parents and Children birth cohort study (ALSPAC) cost an estimated £1 million per year to follow 14,000 families over 20 years 58,59 . The use of linked, routinely-collected records, may offer a lower-cost complement to sample-surveys and birth cohort studies to inform on the aetiology and consequences of mental health in childhood and adolescence. ...
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Young people experiencing mental health conditions are vulnerable to poorer educational outcomes for many reasons, including: social exclusion, stigma, and limited in-school support. Using a near-complete New Zealand population administrative database, this prospective cohort study aimed to quantify differences in educational attainment (at ages 15–16 years) and school suspensions (over ages 13–16 years), between those with and without a prior mental health condition. The data included five student cohorts, each starting secondary school from 2013 to 2017 respectively (N = 272,901). Both internalising and externalising mental health conditions were examined. Overall, 6.8% had a mental health condition. Using adjusted modified Poisson regression analyses, those with prior mental health conditions exhibited lower rates of attainment (IRR 0.87, 95% CI 0.86–0.88) and higher rates of school suspensions (IRR 1.63, 95% CI 1.57–1.70) by age 15–16 years. Associations were stronger among those exhibiting behavioural conditions, compared to emotional conditions, in line with previous literature. These findings highlight the importance of support for young people experiencing mental health conditions at this crucial juncture in their educational pathway. While mental health conditions increase the likelihood of poorer educational outcomes, deleterious outcomes were not a necessary sequalae. In this study, most participants with mental health conditions had successful educational outcomes.
... A similar provision was available in DfE Data Services Provision, which had a linkage service, governed under HMG Security Policy Framework v10 2013, 21 with experience of regularly undertaking external linkages with large scale research cohorts including the Millennium Cohort Study 22 and ALSPAC. 1 Linkage Preparing the CRIS CAMHS identifiers for matching We selected a cohort of young people aged between 4 years and 18 years who were referred to SLaM mental healthcare between 1 September 2007 and 31 December 2013. As described previously, in the UK, unique identifiers, such as national health identifiers, are not shared between health and education databases, so records require matching on personal identifiers common to both data resources (ie, names, dates of birth and residence postcode). ...
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Objectives Creation of linked mental health, social and education records for research to support evidence-based practice for regional mental health services. Setting The Clinical Record Interactive Search (CRIS) system was used to extract personal identifiers who accessed psychiatric services between September 2007 and August 2013. Participants A clinical cohort of 35 509 children and young people (aged 4–17 years). Design Multiple government and ethical committees approved the link of clinical mental health service data to Department for Education (DfE) data on education and social care services. Under robust governance protocols, fuzzy and deterministic approaches were used by the DfE to match personal identifiers (names, date of birth and postcode) from National Pupil Database (NPD) and CRIS data sources. Outcome measures Risk factors for non-matching to NPD were identified, and the potential impact of non-match biases on International Statistical Classification of Diseases, 10th Revision (ICD-10) classifications of mental disorder, and persistent school absence (<80% attendance) were examined. Probability weighting and adjustment methods were explored as methods to mitigate the impact of non-match biases. R esults Governance challenges included developing a research protocol for data linkage, which met the legislative requirements for both National Health Service and DfE. From CRIS, 29 278 (82.5%) were matched to NPD school attendance records. Presenting to services in late adolescence (adjusted OR (aOR) 0.67, 95% CI 0.59 to 0.75) or outside of school census timeframes (aOR 0.15, 95% CI 0.14 to 0.17) reduced likelihood of matching. After adjustments for linkage error, ICD-10 mental disorder remained significantly associated with persistent school absence (aOR 1.13, 95% CI 1.07 to 1.22). Conclusions The work described sets a precedent for education data being used for medical benefit in England. Linkage between health and education records offers a powerful tool for evaluating the impact of mental health on school function, but biases due to linkage error may produce misleading results. Collaborative research with data providers is needed to develop linkage methods that minimise potential biases in analyses of linked data.
... Pearson (2016) discusses the rushed start for the MCS which precluded collection of data during pregnancy. There are historical accounts (Overy et al., 2012;Pearson, 2016) of the emphasis in Alspac on being wide-ranging in the data collected -and see for an innovative hypothesis-free exploratory approach to analysis using numerous variables . These accounts describe how such an approach can be a strength in terms of not being able to anticipate future research questions over the long timescale of the study. ...
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A narrative review conducted by one of the world's leading fatherhood-organisations, of the research evidence relating to fathers in the perinatal period and at the birth in the UK, including identifying 'what mothers want' and describing interactions with Health Care Professionals. Research gaps are identified and recommendations made for policy, practice and research. http://www.fatherhoodinstitute.org/wp-content/uploads/2017/12/Whos-the-Bloke-in-the-Room-Full-Report.pdf
... Given this population-based epidemiological approach, the circumstances behind ALSPAC's development and its collection of biological materials are linked to the public health imperatives of the UK's national health care system. A timeline of the development of ALSPAC could begin in the late 1970s, when Golding was commissioned by the UK Department of Health to design a national birth cohort study for babies born in 1982, a project that was eventually not funded (see Overy, Reynolds, and Tansey 2012). In 1985, Golding was invited by the WHO to design a set of European birth cohort studies. ...
... ALSPAC is heralded as one of the pioneering studies of its type (Overy, Reynolds, and Tansey 2012) and careers have been built on its achievements. It was established at a time and in a place where human tissue research became the focus of national (and international) attention. ...
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Twenty-three years ago when women and their children were recruited to a longitudinal genetic epidemiological study during pregnancy, placentas were collected at birth. This paper explores the history of a regional placenta biobank and contemporary understandings of its value for the constitution of a research population. We draw on interviews with some of the mothers and those responsible for the establishment and curation of the placenta collection in order to explore the significance and meaning of the collection for them. Given its capacity to stand in for the study cohort of mothers and children, we argue that the material significance of the placenta biobank as a research tool seems far less important than the work it does in constituting a population. The stories about this collection may be understood within the wider context of developments in biobanking and the bioeconomy.
... The ALSPAC study team faced great difficulty obtaining funding in the initial years of the project [9]. As time passed and significant risk factors started to be found and reported, it became more widely recognised that the cohort was an incredible resource that should be maintained in the long-term. ...
... Beyond studies that focus on one disease or one exposure, there has been a movement in canine epidemiology toward the broader studies undertaken in human medicine such as the example of ALSPAC mentioned above [9]. These studies do not necessarily aim to test a single hypothesis but rather gather data to identify new areas of investigation. ...
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This paper addresses the use of cohort studies in canine medicine to date and highlights the benefits of wider use of such studies in the future. Uniquely amongst observational studies, cohort studies offer the investigator an opportunity to assess the temporal relationship between hypothesised risk factors and diseases. In human medicine cohort studies were initially used to investigate specific exposures but there has been a movement in recent years to more broadly assess the impact of complex lifestyles on morbidity and mortality. Such studies do not focus on narrow prior hypotheses but rather generate new theories about the impact of environmental and genetic risk factors on disease. Unfortunately cohort studies are expensive both in terms of initial investment and on-going costs. There is inevitably a delay between set up and the reporting of meaningful results. Expense and time constraints are likely why this study design has been used sparingly in the field of canine health studies. Despite their rather limited numbers, canine cohort studies have made a valuable contribution to the understanding of dog health, in areas such as the dynamics of infectious disease. Individual exposures such as neutering and dietary restriction have also been directly investigated. More recently, following the trend in human health, large cohort studies have been set up to assess the wider impact of dog lifestyle on their health. Such studies have the potential to develop and test hypotheses and stimulate new theories regarding the maintenance of life-long health in canine populations.
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Book
The Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s, is a world-leading birth cohort study that uniquely enrolled participants in utero and obtained genetic material from a geographic population. It instigated the innovative but controversial ALSPAC Ethics and Law Committee. This book describes in detail the early work of this Committee, from establishing the core ethical principles necessary to protect participants, to the evolution of policies concerning confidentiality and anonymity, consent, non-intervention and disclosure of individual results, data access and security. Quotes from interviews with early members of the Committee reflect not only on its pioneering work but also on the unusual style and inspirational leadership of the first Chair, Professor Michael Furmston. This will be of interest to those involved in other cohort studies in understanding the evolution of ethical policies as ALSPAC developed.