Project to enhance alspac through record linkage pearl closer. Are iq and educational outcomes in teenagers related to their. The project to enhance alspac through record linkage pearl. Views on social media and its linkage to longitudinal data from two generations of a uk cohort study version 1. Data linkage methods and challenges andrew kress ceo. A software package for the application of probabilistic anonymisation to sensitive individuallevel data. Established in 1991, the avon longitudinal study of parents and children alspac charts the lives of 14,500 people born in the former county of avon between april 1991 and december 1992 as well as the lives of their parents and their children, where applicable. Presentation from the mi lunch on 25 march 2014 on improving the science and challenging participant expectations. Population phenomena inflate genetic associations of. The website also provides a data dictionary and a variable catalogue, to help users make a formal request for data. However parametric linkage analysis under a dominant model, as. Shared genetic influences between dimensional asd and adhd. Alspacthe avon longitudinal study of parents and children.
Linking data held within administrative systems to the data collected by longitudinal studies can enhance the analytical potential of both forms of data, by allowing researchers to combine the rich and varied data collected by longitudinal studies with the detail offered by administrative data. Genetic risk for attentiondeficithyperactivity disorder. Separately, the alspac data linkage team created split files of alspac data and sent these into sail infrastructure using the same mechanism. The hapmap phase ii ceu data ncbi build 36 ucsc hg18 was used as the reference sample for imputation using mach software. First, separate patterns of tobacco and cannabis use were derived using longitudinal latent class analysis based on measures assessed on five occasions. The alspac website has a searchable data dictionary 20 providing details of all available data. The snps with low imputation r2 alspac data linkage team have extensive experience of negotiating access and undertaking linkage to data sets that are either nonroutine or are not routinely centralised. Using linked educational attainment data to reduce bias due to missing outcome data in estimates of the association between the duration of breastfeeding and iq at 15.
The alspac cohort is a prospective birth cohort study in which. Alspac data notes provide all researchers who have accessed alspac data a route to publish. It is used by researchers in health, education and other social science disciplines. All pregnant women in the old administrative region of avon, whose estimated delivery was between april 1991 and december 1992, were eligible to participate. The potential to link to the young persons benefit, earnings and employment data is being explored. Algae software allowing alspac to link geolocated data to participants to. Our variable catalogue zip file, 2mb is a simple list of all alspac variable names and labels that are available, grouped according to data source and timepoint. The alspac website provides copies of the documentation used in the study. Access data and samples avon longitudinal study of. This pilot project is all about making data more accessible and enabling the wider research community to reuse rich datasets which they couldnt do before.
Socioeconomic position and childhood multimorbidity. Alspac the avon longitudinal study of parents and children. The importance of health informatics data and software, prof paul burton, university of bristol. For the data sets i to vi currently deposited with the uk data archive we use data. Datalink aggregates data from every possible source to illustrate the patients health status, needs, and gaps in care to impact and manage risk. All applications are assessed for compliance with alspacs governance and third party data use arrangements. Proposal summaries avon longitudinal study of parents and. Alspac provides the international research community with a rich resource for the study of the environmental and genetic factors that affect a persons health and development.
With this wealth of data alspac provides a rich resource for the study of the. Often, linkage to rwd driven by access or convenience. A randomised controlled trial comparing optin and optout. Avon longitudinal study of parents and children alspac is linked to. Prior to joining alspac, she was a research assistant and phd student at. We can help set up data linkage projects, negotiate and arrange access to suitable datasets, and carry out all the necessary technical processes to link datasets safely. Genomewide linkage and association study implicates the. Cs contributed to design of the study, interpretation of data and drafting of the paper. The data dictionary and variable catalogue will help you decide which data you want to apply for. For first time, alspac study charting children of the 90s. Natural and built environment data avon longitudinal study of. Using polygenic profiles to predict variation in language.
Alspac the avon longitudinal study of parents and children, formerly the avon longitudinal study of pregnancy and childhood was specifically designed to determine ways in which the individuals genotype combines with environmental pressures to influence health and development. The timing of puberty is highly variable and is associated with longterm health outcomes. The alspac access policy describes the process in detail. Explore data and samples avon longitudinal study of. Attitudes towards transactional data donation and linkage in a. The case study looks at how a local population database established in 1976 to investigate possibilities for the prevention of cardiovascular disease is used thirty years later to test. Maelstrom research collaborates with a number of study networks and consortia. Through using the geocoding, the algae software or other linkage processes, to the location research protocol the pearl team are now able to assist research data users link to locationbased data e. This was carried out by the hscic with a 99% match rate 19. Tracing cohort members who have moved or otherwise lost contact with the study is vital. Summary the avon longitudinal study of children and parents alspac was established to understand how genetic and environmental characteristics influence health and development in parents and children. Whereas the possible linkages are numerous, these fall under a range of broad data. Record linkage has been completed for education, hospital episode statistics.
What we did at the feb 2015 hack event overview and service vision. The avon longitudinal study of parents and children alspac have built a dataset of physical and social environmental data which when linked with the wider alspac resource can provide a platform for environmental epidemiology. Linkage between alspac and the gprd linkage between alspac and the gprd was conducted. Linkage avon longitudinal study of parents and children. The alspac website has a searchable data dictionary20 providing details of all available data.
Our data dictionary zip file, 278mb includes detailed information, including frequencies, on all the data that are currently available. The evoke360 platform is a comprehensive, dynamic population health solution that creates the ultimate care, quality, and risk continuum. This profile highlights a particular class of alspac data with distinct access. The alspac genomewide association study gwas data was generated by sample logistics and genotyping facilities at the wellcome trust sanger institute and laboratory corporation of america using support from 23andme. Database management systems and enterprise software the two primary types. Linkage between cohort studies such as alspac and hes data provides unique opportunities for detailed insights into sociodemographic and other determinants of hospital activity, which can inform secondary care demand management in the nhs. A summary of our data linkage activities in alspac. Since 2014 she has been based within the alspac data linkage team, where her role is to work on a series of exemplar projects to demonstrate the value of linking administrative data to cohort data. Sociodemographic patterns in hospital admissions and. Data analysis was conducted from november 1, 2017, to january 1, 2019. Testing the association between tobacco and cannabis use.
Ppt alspac record linkage to external databases powerpoint. Background and aims little is known about injuries resulting from accidents in premobile infants. An overview of record linkage methods linking data for. All pregnant women resident in a defined area in the south west of england, with an expected date of delivery between 1st april 1991 and 31st december 1992, were eligible and 761. The alspac variable catalogue is a simple list of all variable names and labels that are available. There was a total of 1516 alspac mothers with autorefraction data and genotype data available. Update on brisskit and university of bristol alspac. For the first time, the history charting the worldrenowned avon longitudinal study of parents and children alspac, also known as children of.
Assessing longitudinal data linkage results in the compass study pdf compass technical report series, volume 3, issue 4, august 2015. Avon longitudinal study of parents and children menu. The gp software suppliers then sent deidentified clinical data into the same infrastructure and these data were linked to the file containing alf using the case id number which was subsequently dropped. Polygenic risk scores were calculated in the avon longitudinal study of parents and children alspac population sample n 8229 based on a discovery casecontrol genomewide association study of childhood adhd. The alspac enrolled a sample consisted of 14,775 liveborn children from 15,247 pregnancies. We conducted a randomised controlled trial to compare the two approaches in terms of. Point scores were used to obtain a richer measure of a childs attainment than level bandings, with the distributions of the raw scores presented in the supporting information data s1 section 2. To discuss these possibilities please get in touch with the linkage team. There is some debate about the acceptability and relative effectiveness of optin versus optout methods of contacting cohort members to reengage them in this context. A third model to linking health and education data to research has been used by the avon longitudinal study of parents and children alspac study, a large longitudinal research cohort.
Enabling data linkage to maximise the value of public. Project to enhance alspac through record linkage pearl. As part of this application, we strongly encourage you to look at whether these projects may provide useful data or resources. Platform to support linkage to natural and built environment data in alspac. A proof of principle with an example from the alspac birth cohort study. At 6 months of age, parents were asked to describe any accident since birth. Avon longitudinal study of parents and children wikipedia. Apr 11, 2018 for the first time, the history charting the worldrenowned avon longitudinal study of parents and children alspac, also known as children of the 90s, back to its beginnings has been made. Data linkage in the avon longitudinal study of parents and children. Are iq and educational outcomes in teenagers related to.
Modeling linkage disequilibrium increases accuracy of polygenic risk scores. Welcome to the research proposal system avon longitudinal. Linking an established longitudinal data set to one or more administrative registers avon longitudinal study of parents and children alspac is linked to dfe registers national pupil database, annual school census, nhs registers hospital episode statistics, clinical practice research datalink. We can also help you collect new data and samples through a variety of activities, including whole cohort questionnaire collections, recallbygenotype. We conducted a randomised controlled trial to compare the two approaches in terms. Attrition is an important problem in cohort studies. Heritability, genetic correlation, and genetic associations estimated from samples of unrelated individuals are often perceived as confirmation that genotype causes the phenotypes. Jul 24, 2015 attrition is an important problem in cohort studies. Some of these linkages are in place and the data are readily available for use. Questionnaires avon longitudinal study of parents and. Selected subsets of locationbased data are available via the uk data archive.
Alspac the avon longitudinal study of parents and children is an ongoing. We have a vast number of samples and phenotypic, environmental, genetic and linkage data gathered from different cohort groups over the past 25 years. Alspac children were genotyped using the illumina humanhap550 quad chip genotyping platforms. When the children reached legal adulthood age 18, alspac conducted a consent campaign to formally reenrol the children into the study and, at the same. Parametric linkage analysis under a recessive model gave no strong evidence for linkage at any genomic location data not shown. Update on brisskit and university of bristol alspac synergies dr olly butters. Methods the alspac study collected data in successive postal questionnaires. Pdf using linked educational attainment data to reduce. Matching software usually allows the linker to specify the expected ratio of false. Explore data and samples avon longitudinal study of parents. Data linkage between alspac and the national pupil database a central repository for pupillevel educational data in england provided educational assessment data for participants who attended statefunded schools at key stages 2 age 11 and 4 age 16. There are several ways you can explore this resource. Association between polygenic risk score and risk of.
Manually writing the code to perform each step of the data linkage process in software packages such as sas, ms sql server, or r gives the user full control over the entire process. Providing data linkage assistance to researchers and governments is a core service of the australian institute of health and welfare. Associations of adverse childhood experiences with. Research open access socioeconomic position and childhood. Scores for the alspac cohort were obtained through data linkage to the uk national pupil database npd, which represents the most accurate record of. Extensive longitudinal data can introduce selection bias available data sources skew which patients are available not all patients are observable for the same duration source selection is equally. Genomic analysis of male puberty timing highlights shared. Jm conceived the study and is pi of the project to enhance alspac through record linkage. We welcome requests from all researchers to access alspac data and samples, whatever your research area, institution, location or funding source. Regression analyses were used to assess whether polygenic scores predicted adhd traits and asdrelated measures pragmatic language abilities and social cognition in the. Using polygenic profiles to predict variation in language and. Ethical approval was obtained from the alspac ethics and law committee, local research ethics committees and the nhs national information governance board nigb. Data linkage is the joining of two or more administrative or survey datasets using individual. Opportunities and challenges of data linkage for longitudinal.
Data linkage in the avon longitudinal study of parents and. In alspac, parental consent was mandatory until age 16. Alspac record linkage to external databases overview of alspacs existing data linkage projects. Defining adolescent common mental disorders using electronic. Collection of the alspac data began in september 6, 1990, and the last followup assessment of exposure to bullying was conducted when participants were years of age. Avon longitudinal study of parents and children alspac. Developed alspac software components that identify and extract individual eprs. However, these estimates can arise from indirect mechanisms due to population phenomena including population stratification, dynastic effects, and assortative mating. An overview of record linkage methods linking data for health services research. The avon longitudinal study of parents and children alspac, also known as children of the 90s and formerly the avon longitudinal study of pregnancy and childhood, is a cohort study of children born in the former county of avon, england during 1991 and 1992. We aimed to describe the pattern of minor accidents in infants and their resulting injuries. Focusing on data collecting, sampling and linkage, i examine how data organisation and processing become productive beyond the context of their collection.
Based on the methodology and data sources you are using. Data from the alspac sample were used in this study. You may be aware that, amongst our many fantastic collaborators, alspac is strategically linked to three important cohorts which are likely to have data or research opportunities which are relevant to your research. Multipolygenic score approach to identifying individual. Alspac, attitudes, banking data, retail records, consent, data linkage, longitudinal. A genomewide association study for reading and language. This will be a valuable tool when preparing a proposal to access data andor samples. We used childrens and mothers data from the avon longitudinal study of parents and children alspac cohort in this study 18, 19. Summary the avon longitudinal study of children and parents alspac was. Based at the university of bristol, alspac is the most detailed. Avon longitudinal study of parents and children closer.
Our project addresses this by building on core avon longitudinal study of parents and children transactional data linkage program, seeking to develop a methodology for efficient integration of transactional data into lps research. The alspac enrolled a sample consisted of 14,775 live. Linkage to hospital episode statistics hes linkage of the alspac data with hes was enabled by a previous exercise which linked alspac participants to the nhs central register. Apr 06, 2015 presentation from the mi lunch on 25 march 2014 on improving the science and challenging participant expectations. Accidents and resulting injuries in premobile infants. The alspac gateway maximising the potential of rich. Data linkage in the avon longitudinal study of parents and children alspac. Alspac participants have been provided with fair processing materials describing the studies use of the data they have provided or those collected through record linkage and about the legal basis under which the study operates. Although studies have examined the association between tobacco and cannabis use in adolescence with subsequent cognitive functioning, study designs are usually not able to distinguish correlation from causation. A free powerpoint ppt presentation displayed as a flash slide show on id. Apr 30, 2018 this pilot project is all about making data more accessible and enabling the wider research community to reuse rich datasets which they couldnt do before. To date, understanding of the genetic control of puberty timing is based largely on studies in women.
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