scholarly journals Cohort Profile: Extended Cohort for E-health, Environment and DNA (EXCEED)

2018 ◽  
Author(s):  
Catherine John ◽  
Nicola F Reeve ◽  
Robert C Free ◽  
Alexander T Williams ◽  
Aliki-Eleni Farmaki ◽  
...  
Keyword(s):  
South Asian ◽  
Data Access ◽  
Population Based ◽  
Health Records ◽  
Medicine Research ◽  
Electronic Healthcare Record ◽  
South Asian Community ◽  
Precision Medicine Research ◽  
Multiple Morbidity

EXCEED is a longitudinal population-based cohort which facilitates investigation of genetic, environmental and lifestyle-related determinants of a broad range of diseases and of multiple morbidity through data collected at baseline and via electronic healthcare record linkage. Recruitment has taken place in Leicester, Leicestershire and Rutland since 2013 and is ongoing, with 10 156 participants aged 30-69 to date. The population of Leicester is diverse and additional recruitment from the local South Asian community is ongoing. Participants have consented to follow-up for up to 25 years through electronic health records (EHR). Data available includes baseline demographics, anthropometry, spirometry, lifestyle factors (smoking and alcohol use) and longitudinal health information from primary care records, with additional linkage to other EHR datasets planned. Patients have consented to be contacted for recall-by-genotype and recall-by-phenotype sub-studies, providing an important resource for precision medicine research. We welcome requests for collaboration and data access by contacting the study management team via [email protected].

Consent for Use of Genetic Data among US Hispanics/Latinos: Results from the Hispanic Community Health Study/ Study of Latinos

2021 ◽  
Vol 31 (4) ◽  
pp. 547-558
Author(s):  
Sara Gonzalez ◽  
Garrett Strizich ◽  
Carmen R. Isasi ◽  
Simin Hua ◽  
Betsy Comas ◽  
...  
Keyword(s):  
Community Health ◽  
Data Sharing ◽  
Genetic Data ◽  
Genomic Research ◽  
Health Study ◽  
Medicine Research ◽  
For Profit ◽  
Hispanic Community ◽  
Precision Medicine Research

Inclusion of historically underrepresented populations in biomedical research is critical for large precision medicine research initia­tives. Among 13,721 Hispanic Community Health Study/Study of Latinos (HCHS/SOL) enrollees, we used multivariable-adjusted prevalence ratios to describe characteristics associated with participants’ willingness to consent to different levels of biospecimen and genetic data analysis and sharing. At baseline (2008-2011), HCHS/SOL par­ticipants almost universally consented to the use of biospecimens and genetic data by study investigators and their collabora­tors (97.6%; 95%CI: 97.1, 98.0). Fewer consented to biospecimen and genetic data sharing with investigators not affiliated with the HCHS/SOL research team (81%, 95%CI: 80, 82) or any data sharing with commer­cial/for-profit entities (75%, 95%CI: 74, 76). Those refusing to share their data beyond the study investigators group were more often females, Spanish language-speakers and non-US born individuals. As expected, participants who were retained and recon­sented at the six-year follow up visit tended to embrace broader data sharing, although this varied by group. Over time, Puerto Ricans and Dominicans were more likely to convert to broader data sharing than individuals of a Mexican background. Our analysis suggests that acculturation and im­migration status of specific Hispanic/Latino communities may influence decisions about participation in genomic research projects and biobanks. Ethn Dis. 2021;31(4):547- 558; doi:10.18865/ed.31.4.547

scholarly journals The Avon Longitudinal Study of Parents and Children - A resource for COVID-19 research: Questionnaire data capture April-May 2020

2020 ◽  
Vol 5 ◽  
pp. 127 ◽  
Author(s):  
Kate Northstone ◽  
Simown Howarth ◽  
Daniel Smith ◽  
Claire Bowring ◽  
Nicholas Wells ◽  
...  
Keyword(s):  
Longitudinal Study ◽  
Sociodemographic Factors ◽  
Population Based ◽  
Online Questionnaire ◽  
Health Records ◽  
Parents And Children ◽  
Seasonal Flu ◽  
The Impact ◽  
Avon Longitudinal Study

The Avon Longitudinal Study of Parents and Children (ALSPAC) is a prospective population-based cohort study which recruited pregnant women in 1990-1992. The resource provides an informative and efficient setting for collecting data on the current coronavirus 2019 (COVID-19) pandemic. In early March 2020, a questionnaire was developed in collaboration with other longitudinal population studies to ensure cross-cohort comparability. It targeted retrospective and current COVID-19 infection information (exposure assessment, symptom tracking and reported clinical outcomes) and the impact of both disease and mitigating measures implemented to manage the COVID-19 crisis more broadly. Data were collected on symptoms of COVID-19 and seasonal flu, travel prior to the pandemic, mental health and social, behavioural and lifestyle factors. The online questionnaire was deployed across the parent and offspring generations between the 9th April and 15th May 2020. 6807 participants completed the questionnaire (2706 original mothers, 1014 original fathers/partners, 2973 offspring (mean age ~28 years) and 114 partners of offspring). Eight (0.01%) participants (4 G0 and 4 G1) reported a positive test for COVID-19, 77 (1.13%; 28 G0 and 49 G1) reported that they had been told by a doctor they likely had COVID-19 and 865 (12.7%; 426 G0 and 439 G1) suspected that they have had COVID-19.  Using algorithmically defined cases, we estimate that the predicted proportion of COVID-19 cases fell between 1.03% - 4.19% depending on timing of measurement during the period of reporting. Data from this first questionnaire will be complemented with at least two more follow-up questionnaires, linkage to health records and results of biological testing as they become available. Data has been released as: 1) a standard dataset containing all participant responses with key sociodemographic factors and 2) as a composite release coordinating data from the existing resource, thus enabling bespoke research across all areas supported by the study.

scholarly journals Hypertension prevalence in the All of Us Research Program among groups traditionally underrepresented in medical research

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Paulette D. Chandler ◽  
Cheryl R. Clark ◽  
Guohai Zhou ◽  
Nyia L. Noel ◽  
Confidence Achilike ◽  
...  
Keyword(s):  
Blood Pressure ◽  
Research Program ◽  
Age Distribution ◽  
Population Based ◽  
Health Concern ◽  
Cross Sectional ◽  
Rule Based ◽  
Medicine Research ◽  
Treatment And Prevention ◽  
Precision Medicine Research

AbstractThe All of Us Research Program was designed to enable broad-based precision medicine research in a cohort of unprecedented scale and diversity. Hypertension (HTN) is a major public health concern. The validity of HTN data and definition of hypertension cases in the All of Us (AoU) Research Program for use in rule-based algorithms is unknown. In this cross-sectional, population-based study, we compare HTN prevalence in the AoU Research Program to HTN prevalence in the 2015–2016 National Health and Nutrition Examination Survey (NHANES). We used AoU baseline data from patient (age ≥ 18) measurements (PM), surveys, and electronic health record (EHR) blood pressure measurements. We retrospectively examined the prevalence of HTN in the EHR cohort using Systemized Nomenclature of Medicine (SNOMED) codes and blood pressure medications recorded in the EHR. We defined HTN as the participant having at least 2 HTN diagnosis/billing codes on separate dates in the EHR data AND at least one HTN medication. We calculated an age-standardized HTN prevalence according to the age distribution of the U.S. Census, using 3 groups (18–39, 40–59, and ≥ 60). Among the 185,770 participants enrolled in the AoU Cohort (mean age at enrollment = 51.2 years) available in a Researcher Workbench as of October 2019, EHR data was available for at least one SNOMED code from 112,805 participants, medications for 104,230 participants, and 103,490 participants had both medication and SNOMED data. The total number of persons with SNOMED codes on at least two distinct dates and at least one antihypertensive medication was 33,310 for a crude prevalence of HTN of 32.2%. AoU age-adjusted HTN prevalence was 27.9% using 3 groups compared to 29.6% in NHANES. The AoU cohort is a growing source of diverse longitudinal data to study hypertension nationwide and develop precision rule-based algorithms for use in hypertension treatment and prevention research. The prevalence of hypertension in this cohort is similar to that in prior population-based surveys.

scholarly journals Obesity, Ethnicity, and Covid-19 Mortality: A population-based cohort study of 12.6 Million Adults in England

2021 ◽  
Author(s):  
Thomas Yates ◽  
Annabel Summerfield ◽  
Cameron Razieh ◽  
Amitava Banerjee ◽  
Yogini Chudasama ◽  
...  
Keyword(s):  
Cohort Study ◽  
Electronic Health Records ◽  
Ethnic Minority ◽  
Ethnic Groups ◽  
South Asian ◽  
Minority Groups ◽  
Population Based ◽  
Ethnic Minority Groups ◽  
Health Records ◽  
Electronic Health

Abstract Importance: Obesity and ethnicity are well characterised risk factors for severe COVID-19 outcomes, but the differential effects of obesity on COVID-19 outcomes by race/ethnicity has not been examined robustly in the general population. Objective: To investigate the association between body mass index (BMI) and COVID-19 mortality across different ethnic groups. Design, Setting, and Participants: This is a retrospective cohort study using linked national Census, electronic health records and mortality data for English adults aged 40 years or older who were alive at the start of pandemic (24th January 2020). Exposures: BMI obtained from electronic health records. Self-reported ethnicity (white, black, South Asian, other) was the effect-modifying variable. Main Outcomes and Measures: COVID-19 related death identified by ICD-10 codes U07.1 or U07.2 mentioned on the death certificate from 24th January 2020 until December 28th 2020. Results: The analysis included white (n = 11,074,708; mean age 61.9 [13.4] years; 54% women), black (n = 416,542; 56.4 [11.7] years; 57% women), South Asian (621,691; 55.7 [12.4] years; 51% women) and other (n = 478,196; 55.3 [11.6] years; 55% women) ethnicities with linked BMI data. The association between BMI and COVID-19 mortality was stronger in ethnic minority groups. Compared to a BMI of 22.5 kg/m2 in white ethnicities, the adjusted HR for COVID-19 mortality at a BMI of 30 kg/m2 in white, black, South Asian and other ethnicities was 0.95 (95% CI: 0.87-1.03), 1.72 (1.52-1.94), 2.00 (1.78-2.25) and 1.39 (1.21-1.61), respectively. The estimated risk of COVID-19 mortality at a BMI of 40 kg/m2 in white ethnicities (HR = 1.73) was equivalent to the risk observed at a BMI of 30.1 kg/m2, 27.0 kg/m2, and 32.2 kg/m2 in black, South Asian and other ethnic groups, respectively. 5 Conclusions: This population-based study using linked Census and electronic health care records demonstrates that the risk of COVID-19 mortality associated with obesity is greater in ethnic minority groups compared to white populations.

scholarly journals The Avon Longitudinal Study of Parents and Children - A resource for COVID-19 research: Questionnaire data capture April-May 2020

2020 ◽  
Vol 5 ◽  
pp. 127 ◽  
Author(s):  
Kate Northstone ◽  
Simown Howarth ◽  
Daniel Smith ◽  
Claire Bowring ◽  
Nicholas Wells ◽  
...  
Keyword(s):  
Longitudinal Study ◽  
Sociodemographic Factors ◽  
Population Based ◽  
Online Questionnaire ◽  
Health Records ◽  
Parents And Children ◽  
Seasonal Flu ◽  
The Impact ◽  
Avon Longitudinal Study

The Avon Longitudinal Study of Parents and Children (ALSPAC) is a prospective population-based cohort study which recruited pregnant women in 1990-1992. The resource provides an informative and efficient setting for collecting data on the current coronavirus 2019 (COVID-19) pandemic. In early March 2020, a questionnaire was developed in collaboration with other longitudinal population studies to ensure cross-cohort comparability. It targeted retrospective and current COVID-19 infection information (exposure assessment, symptom tracking and reported clinical outcomes) and the impact of both disease and mitigating measures implemented to manage the COVID-19 crisis more broadly. Data were collected on symptoms of COVID-19 and seasonal flu, travel prior to the pandemic, mental health and social, behavioural and lifestyle factors. The online questionnaire was deployed across parent (G0) and offspring (G1) generations between 9th April and 15th May 2020. 6807 participants completed the questionnaire (2706 original mothers, 1014 original fathers/partners, 2973 offspring (mean age ~28 years) and 114 offspring partners). Eight (0.01%) participants (4 G0 and 4 G1) reported a positive test for COVID-19, 77 (1.13%; 28 G0 and 49 G1) reported that they had been told by a doctor they likely had COVID-19 and 865 (12.7%; 426 G0 and 439 G1) suspected that they have had COVID-19.  Using algorithmically defined cases, we estimate that the predicted proportion of COVID-19 cases ranged from 1.03% - 4.19% depending on timing during the period of reporting (October 2019-March 2020). Data from this first questionnaire will be complemented with at least two more follow-up questionnaires, linkage to health records and results of biological testing as they become available. Data has been released as: 1) a standard dataset containing all participant responses with key sociodemographic factors and 2) as a composite release coordinating data from the existing resource, thus enabling bespoke research across all areas supported by the study.

No relation between biomarkers at age 47–49 and aortic diameter after 14–19 years of follow-up – a population-based study

VASA ◽  
2017 ◽  
Vol 46 (4) ◽  
pp. 291-295 ◽  
Author(s):  
Soumia Taimour ◽  
Moncef Zarrouk ◽  
Jan Holst ◽  
Olle Melander ◽  
Gunar Engström ◽  
...  
Keyword(s):  
Population Based ◽  
Aortic Diameter ◽  
Aortic Dilatation ◽  
Population Based Study ◽  
Reactive Protein ◽  
Abdominal Aortic ◽  
Long Term Follow Up ◽  
Old Men

Abstract. Background: Biomarkers reflecting diverse pathophysiological pathways may play an important role in the pathogenesis of abdominal aortic aneurysm (aortic diameter ≥30 mm, AAA), levels of many biomarkers are elevated and correlated to aortic diameter among 65-year-old men undergoing ultrasound (US) screening for AAA. Probands and methods: To evaluate potential relationships between biomarkers and aortic dilatation after long-term follow-up, levels of C-reactive protein (CRP), proneurotensin (PNT), copeptin (CPT), lipoprotein-associated phospholipase 2 (Lp-PLA2), cystatin C (Cyst C), midregional proatrial natriuretic peptide (MR-proANP), and midregional proadrenomedullin (MR-proADM) were measured in 117 subjects (114 [97 %] men) aged 47–49 in a prospective population-based cohort study, and related to aortic diameter at US examination of the aorta after 14–19 years of follow-up. Results: Biomarker levels at baseline did not correlate with aortic diameter after 14–19 years of follow up (CRP [r = 0.153], PNT [r = 0.070], CPT [r = –.156], Lp-PLA2 [r = .024], Cyst C [r = –.015], MR-proANP [r = 0.014], MR-proADM [r = –.117]). Adjusting for age and smoking at baseline in a linear regression model did not reveal any significant correlations. Conclusions: Tested biomarker levels at age 47–49 were not associated with aortic diameter at ultrasound examination after 14–19 years of follow-up. If there are relationships between these biomarkers and aortic dilatation, they are not relevant until closer to AAA diagnosis.

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