Terms & Conditions

PUBLICATION VERSION 1.0 : 1st APRIL 2021

Please read the following Terms & Conditions before making your request.

This information relates to Data Access Requests for access to the NIHR CRNCC Dataset

Studies supported by NIHR CRN, ICD10 Coded, with summary site recruitment data.

Scope and Scale of the Data Being Shared

Research projects which have run in the UK since April 2008 and have been supported by the NIHR Clinical Research Network.

Number of Studies (as of April 2021): c. 17,000

Total number of participants up April 2021: c. 7818420 (this increases by approx 60,000/month)

Rows in tables:

Study: 16927

Participants: 1062000

HRCS Codes: 7158

ICD10 Codes: 11269

Introduction

In agreeing to these Terms and Conditions of Use, you are undertaking to ensure the protection and security of all data provided to you by NIHR CRNCC in association with this request and to process all such data in accordance with the following conditions.

NIHR CRNCC reserves the right to change these Terms and Conditions of Use at any time. The date of issue of this version can be found at the top and bottom of the page.

Acceptable Use

Data within this service are owned by the Department of Health and Social Care, who is the Data Controller. Data may only be copied, downloaded or shared with 3rd parties with written permission and in line with these Terms and Conditions of Use. Specific queries can be made through the information contact listed below.

You are expected to:

1. Retain data only for as long as it is necessary and securely destroy it when no longer required

2. Only present data if you have a clear understanding of its limitations and ensure that the audience is aware of the source of the data

3. Adhere to any relevant data sharing agreements

4. Maintain the integrity of the data that you are sent. If data are fundamentally amended or changed in any way, NIHR CRNCC must no longer be referenced as the source in wider materials.

5. Only use data in relation to research related activities such as those as outlined in your access request . These are defined as activities along the research delivery pathway conducted in relation to, but not limited to, the research idea; study development; study planning, monitoring and performance managing; study set-up and start-up; study recruitment and follow-up; and/or study closure

6. Adhere to any prevailing legislation

7. Seek permission from the NIHR CRNCC (crncc.ig@nihr.ac.uk) if you wish to re-use any data for any purpose other than that stated in your access request. It is the decision of the NIHR CRNCC as to whether to allow such re-use

8. Use the data to; analyse and/or identify current and/or historical trends / make assumptions regarding future trends; use it in metrics, indicators and management dashboards/reports; use it to inform decisions and arising actions; bring it to the attention of other managers where access has also been granted

9. Publish the results of any research projects which have used the data so that they are available to the wider research community.

10. Provide citations to any research projects which have used the data so that CRN and HDRUK can show evidence of the value of this service

Service Availability

The NIHR CRNCC endeavours to ensure that all information provided is accurate and available in a timely manner. If you find inaccurate information please let us know by using the contact details below.

We endeavour to provide high levels of service availability. However availability at any point, particularly out of support hours, is not guaranteed. Support is limited to core service hours (9am-5pm weekdays).

Breaches of these Terms of Use

If you become aware of any breach in these Terms & Conditions you must report it to crncc.ig@nihr.ac.uk.

Current and/or future access requests may be denied if you are found to be in breach of these Terms of Use.

Intellectual Property

The intellectual property of this service and all materials relating to it belong to the Department of Health and Social Care unless otherwise stated.

Further information and contacts

● Email address for reporting security breaches: crncc.ig@nihr.ac.uk

● For queries about these terms and conditions please contact crncc.ig@nihr.ac.uk

How to Request Data from NIHR CRNCC

Please follow the link below to complete our Data Access Request form. You will be asked to provide information about yourself, and the reasons why you want the data and you will be asked to accept the Terms and Conditions stated above. We aim to process your request and (assuming it is approved) return a set of data to you within 10 working days.

The data will be sent to you by email in .CSV format.

For information on how we store and use the data you provide, please see our Privacy Policy.

If you need any further information or want to follow-up your request with a member of our team, please contact us by email at: crncc.ig@nihr.ac.uk.

PUBLICATION VERSION 1.0 : 1st APRIL 2021