Privacy Policy

Purpose

This privacy policy sets out how the RoR registry and community hub uses and protects any data, including your personal information or web content collected when you use this website. We may change this policy from time to time by updating this document.

Scope

This privacy policy is applicable to the RoR registry and community hub website.

Relevant contact details

Research on Research Team, NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), email:

National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre, University of Southampton, Alpha House, Enterprise Road, Southampton, SO16 7NS

For UK Data Protection Act (2018), General Data Protection Regulation (EU GDPR) 2016/679 or other data protection related requests, please contact:
Jane Davy, email:

How we use your information

Any information you provide to the RoR registry and community hub website will only be used in accordance with this privacy policy.

What information we collect

• Name, email address and affiliation – these are collected to allow you to login and access the services offered by the website, this is, registering a study/project and participate in the Discussion forums.
• Registration to the website optionally asks for location in order to generate the interactive map of members of the RoR community. You have full choice over providing this information during the registration to the website.
• You may also provide additional information including job title and affiliations with organisations and institutions.
• On registration of a study/project, we ask researchers for an ORCiD identifier as a consistent and universal identifier of a researcher. This will help us and other researchers and members of the RoR community hub to recognise you as the same individual and will provide opportunities to remove duplication of your effort in recording information more than once. It will also allow members of the RoR community to establish networks by identifying research that may be related to their own RoR fields or areas of interest.

Why we collect the information

Information is collected for the creation of a database of studies/projects in the Research on Research area of academic investigation, and a community of researchers conducting studies or projects in this field.

How long will we keep your data

We will permanently keep your data for as long as the RoR registry and community hub website is active:

• We only store data that is necessary for the purpose of keeping the study/project registry database and the RoR community of researchers.
• We will store your data for the purpose for which it was collected, unless you request your data about the RoR community hub to be removed.
• We will keep the record of the studies/projects registered as the database will inform the RoR community of studies/projects that have been conducted, avoiding duplication and enhancing transparency.

What we do with the information we gather

We require this information for the following reasons:

• Sharing information with the RoR registry and hub community members. For example, for:
  • the registration of a study/project
  • the preparation of material for use by reviewers, NIHR or University of Southampton staff when submitting abstracts to conferences, research publications, or to create promotional material of the RoR registry
  • research and statistical analysis using anonymised data (in accordance with the Information Commissioner’s Office code Anonymisation: managing data protection risk code of practice (click on the statement in bold for the pdf document))
  • analysis of the collective activities and outcomes of the RoR registry and community hub
• Marketing communications to highlight the activities of the RoR registry and community hub and opportunities for engagement. We will seek your explicit consent to contact you for marketing purposes.

Cookies and Log

We use cookies to monitor the use of the website.

When you use the Internet, you are assigned a unique address, known as an IP address. We use IP addresses to analyse trends, to administer the websites, track users’ movements through the websites, and gather statistical information. IP addresses are not linked to other personally identifiable information.

Security and confidentiality

We are committed to ensuring that your information is secure. We make every effort to reduce the risks associated with data in transit over the internet by using appropriate technology, including (but not limited to) SSL for any of our websites or applications which collect data from you. However, we cannot guarantee the security of your data in the parts of its journey which are not under our direct control.

Links to other websites

Information added to the Discussion forum or study records may contain links to other websites of interest outside the RoR study registry and community hub. This privacy policy only applies to the RoR study registry and community hub website and doesn’t cover other websites and services that we may link to. You should exercise caution and look at the privacy statement applicable to the website/service in question.

Protecting your personal information

• We will not sell your personal information. We will not disclose your personal information to third parties outside of the RoR study registry and community hub, except for the purposes described in this privacy policy, unless we have your consent, or are required by law to do so.
• You have the “right of access by the data subject” under the UK Data Protection Act (2018)and the General Data Protection Regulation (EU GDPR) 2016/679, and may request details of personal data which we hold about you.
• If you have any questions about the RoR study registry and community hub privacy policy, please write to:
  • NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) Research on Research Team, email:
• If you believe that any information we are holding on you is incorrect or incomplete, please write to or email us as soon as possible, at the above address. We will promptly correct any information found to be incorrect.
• You have the right to request erasure of your personal data held by the RoR study registry and community hub. If you would like to request this, please contact us through the details provided above.
• You have the right to object to processing for direct marketing. You also have the right to object to profiling taking place to support those activities.
• You have a right to data portability.
• Your rights are not absolute. If we are not able to meet your request, we will explain the reason.
• You have the right to lodge a complaint with the Information Commissioner’s Office, if you think there is a problem with the way we are handling your personal identifiable information.