British Heart Foundation Data Science Centre Trusted Research Environment: Vanguard Cohort Linkage

Cohort information

We would appreciate if you could take a few minutes to answer this short questionnaire to ensure we have captured accurate and up-to-date information on your cohort.

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* 1. Name of your cohort study.

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* 2. Please provide a brief description of your cohort, including disease area.

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* 3. Name and email address of your cohort PI.

Name

Organisation

Email Address

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* 4. Name and email address of your primary liaison contact.

Name

Organisation

Email Address

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* 5. Please provide your website details (if one is available).

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* 6. What is your funding situation for data linkage?

We have funding for the use of a TRE for storage and linkage of our data

We're applying for funding for the use of a TRE for storage and linkage of our data

We don't have funding for the use of a TRE for storage and linkage of our data

Other (please specify)

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* 7. How many cohorts do you want to onboard into the environment?

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* 8. What is the size of your cohort? e.g. 8000 and looking to recruit 15000

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* 9. What is the total number of datasets to be ingested into the environment?

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* 10. What is the file size for each dataset?

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* 11. Which institution is the data controller for the cohort data?

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* 12. Please check below the phase your cohort is currently in.

In set up

Recruiting

In recruitment

Recruitment completed

Other (please specify)

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* 13. Which countries are you recruiting from?

England

Scotland

Wales

Northern Ireland

Other (please specify)

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* 14. If your study is complete, would you be looking to upload a complete dataset?

Yes

Other (please specify)

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* 15. Please let us know of any Patient and Public Involvement and Engagement activity that has taken place for your cohort, for example do you have an established PPIE group, have any patient groups been consulted on the use of this TRE?

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* 16. Please check all study data types your cohort collects and you would be looking to upload to the TRE for linkage. Please provide further information if necessary.

Clinical data

Blood inventory data

Demographic data

Imaging data

Pathological data

Personal monitoring data

Radiological data

Other (please specify)

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* 17. Do you plan to upload data from blood output samples?

Yes