Epidemiology for health - EpiHealth

Summary

Strengths: Long term orientation – new scientific frontiers Apart from serving as a large population-based study with a prospective design, EpiHealth could be used together with the future intended biobanking efforts coupled to the Swedish Health Quality of Care registers (such as Riks-HIA, Riks-Stroke, SEPHIA etc), so that large case-control studies including 100,000s of cases of a certain disease collected from the registers could be matched with 100,000s of controls selected from EpiHealth. This procedure could compare life-style factors, biochemical markers and genetic information like genotyping etc. in cases and controls. A follow-up of the cohort, for example each 5th year, following the baseline investigation regarding information that could be obtained by the web-based questionnaire is planned. If economically feasible, a follow-up test centre visit, for example each 10th year, is planned. We have a close collaboration with the LifeGene project in that we share the same IT-based data structure for collecting life-style information and biobanking. Weaknesses: The EpiHealth programme is in an implantation conditions and it is too early to discuss weaknesses.

Type of data

Data Source
Registry + Survey

Type of Study
Cohort study

Data gathering method
Registries
Self administered questionnaire

Access to data

Conditions of access
To be discussed with principal investigators.

Type of available data (e.g. anonymised microdata, aggregated tables, etc.)

Formats available
When data for comparative studies are available; most application will be used as: ASCII, CSV, Excel, SAS, SPSS, STATA, Text, etc.

Coverage

Coverage Years of collection, reference years, and sample sizes
EpiHealth aims to build a national resource in the form of a multicenter longitudinal cohort study investigating the interaction between genes and life-style factors regarding the development of common diseases seen in the elderly in 300,000 Swedish men and women between the ages of 45 and 75 years. It is an open-access resource so that different scientists, not only those building the cohort, could use the data for research. The EpiHealth cohort study is a collaboration project between Uppsala and Lund Universities that was evaluated in 2009 and found to be a Swedish ”centre of excellence” by the Swedish research council and thereby sponsored by the Government (SFO), named EpiHealth. Thus, by this grant it has been possible to start up the study, but further funding is needed in order to reach the goal of 300,000 screened individuals. The study started with the opening of a test centre in Uppsala April 26th 2011. The second test centre opened in Jan 11th 2012 in Malmö.

First year of collection
2012

Stratification if applicable

Base used for sampling

Geographical coverage and breakdowns
Uppsala and Lund/Malmö regions

Age range
Individuals between the ages of 45 and 75.

Statistical representativeness
Special group, please specify

Coverage of main and cross-cutting topics
Participation in EpiHealth consists of three parts – completing a web-based baseline questionnaire, completing physical tests and biological sampling at a test centre, and follow-up through official Swedish registers regarding future diseases. The baseline questionnaire provides information about the participants’ medical history and life-style and is divided into fifteen sections such as family structure, education, and physical activity. The baseline questionnaire can be completed at home by logging in to a personal webpage at www.epihealth.se. At the EpiHealth Test Centre, physical measurements and blood samples are collected to provide baseline data, such as the participants’ cardiovascular status, lung and cognitive function. The EpiHealth database will be merged with the unique Swedish registries regarding health care.

Linkage

Standardisation
This dataset and research platform is interdisciplinary oriented and covers a number of standardisations in the field of medicine and health as DSM-5, ADL, ACT etc.

Possibility of linkage among databases
These will build upon already existing national epidemiologic infrastructures, such as national health quality registers, population-based cohorts and biobanks. Epihealth will also develop new national and international research data registers and biobanks creating and "easy access" infrastructure for research both in Sweden and abroad.

Data quality

Entry errors if applicable
Too early to describe. https://www.epihealth.se/PageFiles/702/EpiHealth%20studieprotokoll%20101103.pdf

Breaks
Too early to describe. https://www.epihealth.se/PageFiles/702/EpiHealth%20studieprotokoll%20101103.pdf

Consistency of terminology or coding used during collection
Too early to describe. https://www.epihealth.se/PageFiles/702/EpiHealth%20studieprotokoll%20101103.pdf

Governance

Contact information
Prof. Lars Lind / Department of Medical Sciences; Prof. Sölve Elmståhl / Division of Geriatric Medicine, Department of Health Sciences
Uppsala University; Lunds University
PO Box 117
221 00 Lund Sweden Phone: +46 40 39 13 20
Email: lars.lind(at)medsci.uu.se; Solve.Elmstahl(at)med.lu.se
Url: https://www.epihealth.se/For-scientists/

Timeliness, transparency
This new dataset is in a starting up situation and has a long term orientation to combine health data (also from bio banks) and social data.