Working with Us

The UKRR research team welcomes contact from renal clinicians and other researchers who would like to access UKRR data and collaborate with the UKRR on grant applications.

We only release data to academic and clinical organisations.

Applying to access UKRR data

The UKRR dataset provides a list of all the data items the UKRR aims to collect – please email us to check that (a) we hold the data of interest to you and (b) data completeness is sufficiently high for your proposed analyses. You will shortly be able to view data completeness of key variables through the UKRR audit portal.

Much of the transplant data are provided by NHS Blood and Transplant (NHSBT) – the UKRR has permission to release these data. If your application includes NHSBT-derived data and their release is approved we will ask you to fill out the NHSBT data release form – please return this to us by email and we will liaise with NHSBT on your behalf.

UKRR data can be released in one of two formats:

Applying to access these data requires different processes as detailed below.

Aggregate level data

Download and complete the aggregate data application form and return it by email to ukrr-research@renalregistry.nhs.uk

Please contact us if you would like to have an informal discussion prior to submitting your form. We accept applications throughout the year. Applications will be considered by the UKRR medical director and a UKRR statistician and applicants will be notified of their decision within two weeks. If your request is approved, the delivery of the data will require at least a further three weeks and may take longer if your request is considered complex.

Please familiarise yourself with the UKRR’s authorship policy.

Individual level (anonymised) data

You must contact us at least two weeks prior to submitting an application for individual level data. With feedback from a UKRR statistician and/or the medical director, your full application is far more likely to contain all the required information to be considered during the assessment process.

The individual level data application pack contains a description of the assessment processes (which differ slightly depending upon whether the application is for research or non-research purposes), an application form, protocol template and assessment forms.

If your request is approved you will be asked to complete a data sharing agreement to ensure that, for example, the released data will be stored securely and will only be accessible to the applicant(s). Contact us if you have any queries.

It is best if you or a member of your team have sufficient statistical expertise to analyse the data appropriately for your proposed project. However, you may request involvement of the UKRR statisticians, but for a UKRR statistician to become involved we will need to consider their current workload and whether your proposed project aligns with The Renal Association research strategy.

Any output without a UKRR co-author must include the UKRR’s acknowledgement and disclaimer statements. Any outputs with a UKRR co-author must be approved by the UKRR co-author before submission for publication and the output must include the UKRR’s acknowledgement text.

Please familiarise yourself with the UKRR’s authorship policy.

The UKRR’s Research Methods Study Group (RMSG) has set a limit of two active analyses per research group at any time; we will contact you annually to hear your progress. If a research question changes, this must be approved by the UKRR – you can only use the released data for the analyses detailed in the approved protocol. These rules have been developed with the Health Research Authority Confidentiality Advisory Group and form part of the legal basis for the UKRR to use data for audit or research with section 251 support. The UKRR will therefore regularly audit compliance with these rules.

Please contact us if you are interested in linking UKRR data to Hospital Episode Statistics (HES) data.

Non-research projects

Applications for non-research projects can be submitted to the UKRR research team throughout the year (ukrr-research@renalregistry.nhs.uk). Applications are assessed internally for risk, but are not peer-reviewed externally. Applicants will be notified of the UKRR medical director’s decision within three weeks. Data will be released within four weeks of completing a data sharing agreement.

Research projects

Applications for research projects must be received before the next quarterly deadline:

  • Monday 1 July 2019 0900h

Following deadline:

  • Monday 7 October 2019 0900h

Research applications will be peer-reviewed by two external clinician researchers and one UKRR statistician and then considered by the RMSG committee at their next quarterly meeting. Applicants will be notified of the committee’s decision within three weeks. The delivery of the data will require at least a further four weeks following completion of a data sharing agreement and may take longer if your request is considered complex.

Collaborating with the UKRR on grant applications

For some grants, you may simply want outcome data from the UKRR dataset, whereas for others, you will want to collaborate fully and formally with the UKRR at all stages of a project, including design, grant writing, research governance, development of IT research data collection solutions, analyses and reporting.

Please email us at least four weeks before the grant application deadline.

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