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Version: 1.0.0 | Published: 17 Feb 2025 | Updated: 374 days ago

Extend (The Exeter 10,000 project)

Dataset

Summary

DOI Name:
10.48532/025000

Documentation

Description:
A re-contactable research volunteer register and sample biobank of local people with and without health problems who are willing to provide blood and urine samples, have their blood pressure taken and answer simple health and lifestyle questions. Half of the sample taken is used to measure diagnostic markers including blood sugar and cholesterol, which can be shared with the volunteer and the remaining half (requiring consent from the participant) is saved in a biobank. Participants without diabetes will be offered the opportunity to receive a copy of their health measures and blood tests. They may also choose to have these results copied to their doctor. Participants are invited to a return visit (after around three years) to replace samples that have been used up, and update the measurements and other health data recorded The Peninsula Research Bank (PRB) holds the data and banked samples of DNA, urine, serum, plasma and prospectively collected RNA/ whole blood for long term management. The Extend/PRB Biobank enables research into why some people are predisposed to develop a disease as they get older and why some people are protected. The EXTEND register volunteers who are identifiable by phenotype and genotype and agree that they can be contacted to participate in various research projects based on their genetic predisposition have the choice of whether they wish to be involved in studies about Dementia/Alzheimer"s disease. Participants can give permission for Researchers to access their medical records.

Coverage

Spatial:
United Kingdom
Follow Up:
Continuous

Provenance

Origin

Purposes:
Research cohort

Temporal

Accrual Periodicity:
Continuous
Start Date:
23 March 2010
Time Lag:
Not applicable

Accessibility

Access

Access Service:
The Data Portal runs its analysis environment through a virtual desktop infrastructure accessible via VMWare software. By analysing the data in the virtual desktop environment you are working on DPUK"s servers – meaning there is no physical transfer of data to researchers. The processing capacity enables you to work with large numbers of records and integrate these with the other data modalities that exist in the DPUK cohorts. This solution also offers researchers the freedom to conduct their analyses anywhere with an internet connection.
Data Controller:
University of Exeter Medical School in partnership with the Royal Devon and Exeter NHS Foundation Trust
Data Processor:
Dementias Platform UK

Format and Standards

Vocabulary Encoding Schemes:
OTHER
Conforms To:
OTHER
Languages:
en
Formats:
CSV