Who we are 

The MRC/NIHR UK Rare Disease Research UK Platform Hub is led by Newcastle University in partnership with The Newcastle upon Tyne Hospitals NHS Foundation Trust and Genetic Alliance UK. Newcastle University is the Data Controller for the personal data processed for the purposes described in this privacy notice.

Purpose of processing 

We collect and use personal information to support the activities and objectives of the Rare Disease Research UK Platform Hub. This includes:

• Maintaining contact databases and mailing lists.
• Communicating with researchers, clinicians, patients, family members, carers and other stakeholders.
• Providing information about Platform activities, events, meetings, funding opportunities and research engagement activities.
• Facilitating collaboration between organisations involved in the Platform.

What information we collect

We may collect:

• Name
• Email address
• Telephone number

We only collect personal information that is necessary to support the operation of the Platform Hub. The Hub does not intend to collect or process medical records or other special category personal data through these contact databases and mailing lists.

Who we collect information about

We may collect information relating to:

• Researchers, clinical staff and others working on the Platform.
• Staff working at UK universities and NHS organisations involved in the Platform.
• Employees of charities, industry partners, government bodies and other organisations associated with the Platform.
• Patients, family members and carers who wish to engage with Platform activities.

Lawful basis for processing

Under UK GDPR, the lawful basis for processing your personal data is:

Article 6(1)(e) UK GDPR – Public Task

Processing is necessary for the performance of a task carried out in the public interest as part of Newcastle University’s research, engagement and knowledge exchange activities.

How we collect your information 

Personal information is normally collected directly from you by email, event registration forms, enquiries, stakeholder engagement activities or other communications with the Platform Hub.

Information initially received through the Platform email account is transferred to secure Newcastle University systems and removed from the email account when no longer required there.

Who we share information with

Your personal data may be shared with:

• Members of the Rare Disease Research UK Platform Hub team.
• Partner organisations involved in the Platform where this is necessary to support Platform activities.
• Service providers supporting Platform communications and hosting services.

We will only share personal data where there is a lawful basis to do so and appropriate safeguards are in place.

International transfers

Personal data is not routinely transferred outside the United Kingdom or European Economic Area (EEA). Where international transfers are necessary, appropriate safeguards will be implemented in accordance with UK GDPR requirements.

How we keep your information secure

We use a range of technical and organisational measures to protect personal information, including:

• Secure storage on Newcastle University systems.
• Role-based access controls.
• Password protection and multi-factor authentication.
• Secure backup and recovery arrangements.
• Information governance and data protection training for staff.

How long we keep your information

Records relating to this project will be retained for the life of the project and subsequently for at least six years following the expiry or termination of the associated UKRI contract. Retention periods may be extended where this is required by law, funder requirements, or agreement between the parties.

Your rights

Under UK GDPR you have the right to:

• Be informed about how your personal data is used.
• Access your personal data.
• Request correction of inaccurate personal data.
• Request erasure of personal data in certain circumstances.
• Restrict processing in certain circumstances.
• Object to processing carried out under Article 6(1)(e) Public Task.
• Lodge a complaint with the Information Commissioner’s Office (ICO).

Contact us

If you have questions about this privacy notice or how your personal information is used, please contact:

Project Contact

Email: hub@rd-research.org.uk

Data Protection Officer

Newcastle University
Email: rec-man@newcastle.ac.uk

Complaints

If you are unhappy with how your personal information has been handled, you may contact Newcastle University’s Data Protection Officer in the first instance.

You also have the right to lodge a complaint with the Information Commissioner’s Office (ICO).

Last updated: August 2026