scholarly journals Generation Scotland: using data linkage for longitudinal studies

Author(s):  
Archie Campbell

ABSTRACTObjectivesGeneration Scotland: Scottish Family Health Study (GS:SFHS) is a family-based genetic epidemiology study of ~24,000 volunteers from ~7000 families recruited across Scotland between 2006 and 2011 with the capacity for follow-up through record linkage and re-contact. ApproachParticipants completed a demographic, health and lifestyle questionnaire and provided biological samples including DNA, and 90% underwent detailed clinical assessment, including anthropometric, cardiovascular, respiratory, cognition and mental health. The biological samples, phenotype and genotype data collected form a resource with broad consent for academic and commercial research on the genetics of health, disease and quantitative traits of current and projected public health importance. Features include the family-based recruitment; breadth and depth of phenotype information, with detailed data on cognition, personality and mental health. GWAS and exome genotype data is available on most of the cohort. These features maximise the power of the resource to identify, replicate or control for genetic factors associated with a wide spectrum of illnesses and risk factors. By linkage to routine NHS hospital, lab tests, prescribing and dental records this has become a longitudinal dataset, using the Scottish Community Health Index (CHI). Results Researchers are now able to use the dataset to find prevalent and incidental disease cases, and healthy controls, to test research hypotheses on a stratified population. They can also do targeted recruitment of participants to new studies, utilising the NHS CHI register for up to date contact details. There are 6 published papers on a variety of conditions and currently around 10 ongoing studies based on our record linkage capabilities. ConclusionWe have thoroughly tested the linkage process and plan to extend it to include primary care data (GP records) in the next year. There are current or planned collaborations looking into heart disease, diabetes, breast and colon cancers, depression, neuropathic pain, Alzheimer’s disease and dementia. Generation Scotland is also a contributor to major international consortia. The resources are available to academic and commercial researchers through a managed access process.

Author(s):  
Archie Campbell ◽  
David Porteous

Generation Scotland: Scottish Family Health Study (GS:SFHS) is a family-based genetic epidemiology study of ~24,000 volunteers from ~7000 families recruited across Scotland between 2006 and 2011 with the capacity for follow-up through record linkage and re-contact. Broad consent was obtained for linkage to “medical records” for 98% of the cohort. Participants completed a questionnaire, provided samples, and underwent clinical assessment. The samples and data collected form a resource with consent for research on the genetics of health, becoming a longitudinal dataset by linkage to routine NHS hospital, maternity, lab test, prescribing, dentistry and mortality data. Researchers can use the linked datasets to test research hypotheses on a stratified population and target recruitment to new studies. We have established and validated EHR linkage, overcoming technical and governance issues in the process. We plan to collaborate with UK Biobank, creating a combined cohort of over 50,000 people in Scotland, and using the SHARE register to obtain new research samples from routine NHS tests. We will extend linkage to include primary care data and scanned images in the next year. The resources are available to academic and commercial researchers through a managed access process.


Diabetes ◽  
2019 ◽  
Vol 68 (Supplement 1) ◽  
pp. 1461-P
Author(s):  
PAUL WELSH ◽  
DAVID PREISS ◽  
ARCHIE CAMPBELL ◽  
DAVID J. PORTEOUS ◽  
NICHOLAS L. MILLS ◽  
...  

2017 ◽  
Vol 81 (10) ◽  
pp. S217
Author(s):  
Joeri Meijsen ◽  
Archie Campbell ◽  
Andrew McIntosh ◽  
David Porteous ◽  
Ian Deary ◽  
...  

2010 ◽  
Vol 4 (S1) ◽  
pp. S17-S27 ◽  
Author(s):  
David M. Abramson ◽  
Yoon Soo Park ◽  
Tasha Stehling-Ariza ◽  
Irwin Redlener

ABSTRACTBackground: Over 160 000 children were displaced from their homes after Hurricane Katrina. Tens of thousands of these children experienced the ongoing chaos and uncertainty of displacement and transiency, as well as significant social disruptions in their lives. The objectives of this study were to estimate the long-term mental health effects of such exposure among children, and to elucidate the systemic pathways through which the disaster effect operates.Methods: The prevalence of serious emotional disturbance was assessed among 283 school-aged children in Louisiana and Mississippi. These children are part of the Gulf Coast Child & Family Health Study, involving a longitudinal cohort of 1079 randomly sampled households in the two states, encompassing a total of 427 children, who have been interviewed in 4 annual waves of data collection since January 2006. The majority of data for this analysis was drawn from the fourth round of data.Results: Although access to medical care for children has expanded considerably since 2005 in the region affected by Hurricane Katrina, more than 37% of children have received a clinical mental health diagnosis of depression, anxiety, or behavior disorder, according to parent reports. Children exposed to Hurricane Katrina were nearly 5 times as likely as a pre-Katrina cohort to exhibit serious emotional disturbance. Path analyses confirm the roles played by neighborhood social disorder, household stressors, and parental limitations on children's emotional and behavioral functioning.Conclusions: Children and youth are particularly vulnerable to the effects of disasters. They have limited capacity to independently mobilize resources to help them adapt to stressful postdisaster circumstances, and are instead dependent upon others to make choices that will influence their household, neighborhood, school, and larger social environment. Children's mental health recovery in a postdisaster setting can serve as a bellwether indicator of successful recovery or as a lagging indicator of system dysfunction and failed recovery.(Disaster Med Public Health Preparedness. 2010;4:S17-S27)


Author(s):  
Alex S. F. Kwong ◽  
Rebecca M. Pearson ◽  
Mark J. Adams ◽  
Kate Northstone ◽  
Kate Tilling ◽  
...  

SummaryBackgroundThe impact of COVID-19 on mental health is unclear. Evidence from longitudinal studies with pre pandemic data are needed to address (1) how mental health has changed from pre-pandemic levels to during the COVID-19 pandemic and (2), whether there are groups at greater risk of poorer mental health during the pandemic?MethodsWe used data from COVID-19 surveys (completed through April/May 2020), nested within two large longitudinal population cohorts with harmonised measures of mental health: two generations of the Avon Longitudinal Study of Parents and Children (ALPSAC): the index generation ALSPAC-G1 (n= 2850, mean age 28) and the parent’s generation ALSPAC-G0 (n= 3720, mean age = 59) and Generation Scotland: Scottish Family Health Study (GS, (n= 4233, mean age = 59), both with validated pre-pandemic measures of mental health and baseline factors. To answer question 1, we used ALSPAC-G1, which has identical mental health measures before and during the pandemic. Question 2 was addressed using both studies, using pre-pandemic and COVID-19 specific factors to explore associations with depression and anxiety in COVID-19.FindingsIn ALSPAC-G1 there was evidence that anxiety and lower wellbeing, but not depression, had increased in COVID-19 from pre-pandemic assessments. The percentage of individuals with probable anxiety disorder was almost double during COVID-19: 24% (95% CI 23%, 26%) compared to pre-pandemic levels (13%, 95% CI 12%, 14%), with clinically relevant effect sizes. In both ALSPAC and GS, depression and anxiety were greater in younger populations, women, those with pre-existing mental and physical health conditions, those living alone and in socio-economic adversity. We did not detect evidence for elevated risk in key workers or health care workers.InterpretationThese results suggest increases in anxiety and lower wellbeing that may be related to the COVID-19 pandemic and/or its management, particularly in young people. This research highlights that specific groups may be disproportionally at risk of elevated levels of depression and anxiety during COVID-19 and supports recent calls for increasing funds for mental health services.FundingThe UK Medical Research Council (MRC), the Wellcome Trust and University of Bristol.


2017 ◽  
Vol 2 ◽  
pp. 85 ◽  
Author(s):  
Shona M. Kerr ◽  
Archie Campbell ◽  
Jonathan Marten ◽  
Veronique Vitart ◽  
Andrew M McIntosh ◽  
...  

This article provides the first detailed demonstration of the research value of the Electronic Health Record (EHR) linked to research data in Generation Scotland Scottish Family Health Study (GS:SFHS) participants, together with how to access this data. The structured, coded variables in the routine biochemistry, prescribing and morbidity records, in particular, represent highly valuable phenotypic data for a genomics research resource. Access to a wealth of other specialized datasets, including cancer, mental health and maternity inpatient information, is also possible through the same straightforward and transparent application process. The EHR linked dataset is a key component of GS:SFHS, a biobank conceived in 1999 for the purpose of studying the genetics of health areas of current and projected public health importance. Over 24,000 adults were recruited from 2006 to 2011, with broad and enduring written informed consent for biomedical research. Consent was obtained from 23,603 participants for GS:SFHS study data to be linked to their Scottish National Health Service (NHS) records, using their Community Health Index number. This identifying number is used for NHS Scotland procedures (registrations, attendances, samples, prescribing and investigations) and allows healthcare records for individuals to be linked across time and location. Here, we describe the NHS EHR dataset on the sub-cohort of 20,032 GS:SFHS participants with consent and mechanism for record linkage plus extensive genetic data. Together with existing study phenotypes, including family history and environmental exposures, such as smoking, the EHR is a rich resource of real world data that can be used in research to characterise the health trajectory of participants, available at low cost and a high degree of timeliness, matched to DNA, urine and serum samples and genome-wide genetic information.


2016 ◽  
Author(s):  
LB Navrady ◽  
SJ Ritchie ◽  
SWY Chan ◽  
DM Kerr ◽  
MJ Adams ◽  
...  

ABSTRACTBackgroundNeuroticism is a risk factor for selected mental and physical illnesses and is inversely associated with intelligence. Intelligence appears to interact with neuroticism and mitigate its detrimental effects on physical health and mortality. However, the inter-relationships of neuroticism and intelligence for major depressive disorder (MDD) and psychological distress has not been well examined.MethodsAssociations and interactions between neuroticism and general intelligence (g) on MDD and psychological distress were examined in two population-based cohorts: Generation Scotland: Scottish Family Health Study (GS:SFHS, N=19,200) and UK Biobank (N=90,529). The Eysenck Personality Scale Short Form-Revised measured neuroticism and g was extracted from multiple cognitive ability tests in each cohort. Family structure was adjusted for in GS:SFHS.ResultsNeuroticism was associated with MDD and psychological distress in both samples. A significant interaction between neuroticism and g in predicting MDD status was found in UK Biobank (OR = 0.96, p < .01), suggesting that higher g ameliorated the adverse effects of neuroticism on the likelihood of having MDD. This interaction was not found in GS:SFHS. In both samples, higher neuroticism and lower intelligence were associated with increased psychological distress. A significant interaction was also found in both cohorts (GS:SFHS: ß = -0.05, p < .01; UK Biobank: ß = -0.02, p < .01), such that intelligence protected against the deleterious effect of neuroticism on psychological distress.ConclusionsFrom two large cohort studies, our findings suggest intelligence acts a protective factor in mitigating the effects of neuroticism on risk for depressive illness and psychological distress.


2017 ◽  
Vol 47 (1) ◽  
pp. 13-14g ◽  
Author(s):  
L B Navrady ◽  
M K Wolters ◽  
D J MacIntyre ◽  
T-K Clarke ◽  
A I Campbell ◽  
...  

Author(s):  
Archie Campbell ◽  
Rachel Edwards ◽  
David Porteous

Background Generation Scotland is a family-based genetic epidemiology study of ~24,000 volunteers from ~7000 families recruited across Scotland with the capacity for follow-up through record linkage and re-contact. Broad consent was obtained for linkage to “medical records” for 98% of the cohort. This created a resource for investigation of the genetics of common conditions, available to researchers worldwide. Methods Participants completed a demographic, health and lifestyle questionnaire, provided samples, and underwent detailed clinical assessment. The samples and data collected form a resource with broad consent for research on the genetics of conditions of current and projected public health importance. This has become a longitudinal dataset by linkage to routine NHS hospital, maternity, lab tests, prescribing, dentistry, and mortality data. Results Researchers can use the linked datasets to find prevalent and incident disease cases, and healthy controls, in a stratified population. They can also do targeted recruitment of participants to new studies, including recall by genotype. We have established and validated EHR linkage, overcoming technical and governance issues in the process. Using consented data avoids some limitations of safe havens for analysis. Genome-wide association studies (GWAS) have been done on a wide range of quantitative traits and biomarker measurements. Generation Scotland is a contributor to major international consortia and has collaborated with Dementia Platforms UK and Health Data Research UK to make the resources more widely known. There have been over 300 research collaborations, and GS data has contributed to 200 publications, with more in the pipeline. Conclusions Generation Scotland has thoroughly tested the linkage process and is extending it to include primary care data and scanned images, with plans to collect more samples and data. The resources are available to academic and commercial researchers through a managed access process (www.generationscotland.org).


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