DMD Hub Central Recruitment Pilot Project

Privacy Notice

DMD Hub Central Recruitment Database

Newcastle University is collecting your data to facilitate your participation in the DMD Hub Central Recruitment Database Project.

Newcastle University is a data controller in terms of the General Data Protection Regulations (GDPR) and the relevant data protection legislation (Data Protection Act 2018).  The data you provide will be processed in line with the University Data Collection Notices which can be found at: https://www.ncl.ac.uk/data.protection/

How we get your personal information

We obtain personal data about you from the following sources:

  • From you, when you agree to participate in the DMD Hub Central Recruitment Database Project.

  • From you, when you contact us via email, phone or post.

Under data protection legislation, we are required to have a lawful basis to process your data. The lawful basis we rely upon is Art 6 (e) Public Task.

Health information is classed as ‘special category’ data, for which we are required to have a further lawful basis. The lawful basis we rely upon when processing this information is Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes.

How we store your data

The data is stored securely on servers provided by ARO which complies with ISO 27001 Information Security Management System (ISMS).

Sharing information

Within Newcastle University

  • The DMD Hub team based at the John Walton Muscular Dystrophy Research Centre, Newcastle University.

External bodies

  • Clinical Trial sites in the UK that are conducting research studies into Duchenne Muscular Dystrophy who have been approved by the DMD Hub Central Recruitment Database steering committee.
  • Health Care Professionals based at neuromuscular centre(s) you inform us about on the DMD Hub Central Recruitment Database questionnaire, where you receive treatment for Duchenne Muscular Dystrophy.
  • Aggregate data shared with organisations such as patient organisations, academic institutions and industry partners who have been approved by the DMD Hub Central Recruitment Database steering committee.
  • Duchenne UK, as the patient organisation supporting the CRD, may be granted access to participant contact information (name and contact information) for community outreach and communications purposes.  All participants will be asked whether they are willing to share their contact details with Duchenne UK. This will not impact the enrolment in the CRD. Consent for this can be removed at any time by the participant

Your data protection rights

Under data protection law, you have rights. The rights applicable in this instance are the right to rectification and the right to access the information we hold about you.

Retention periods

The DMD Hub Central Recruitment Database will retain your data for no longer than is necessary for the purpose of the project at Newcastle University OR for no longer than six years after the project has ended., in line with the University’s Retention Schedule.

Changes to this Notice

We reserve the right to make changes to this Notice.  We shall inform you of any changes to this notice using the appropriate medium of communication.

If you have a query with regard to this Notice, please contact:

Phillip Cammish
The John Walton Muscular Dystrophy Research Centre
Newcastle University
Translational and Clinical Research Institute
Central Parkway
Newcastle upon Tyne,
NE1 3BZ, UK

Email: dmdhub@ncl.ac.uk

For further information about how we manage your data or to exercise your rights as a data subject and for contact details of the Data Protection Officer please visit our website https://www.ncl.ac.uk/data.protection/

How to complain

If you have any concerns about our use of your personal information, you can make a complaint to us by emailing recman@ncl.ac.uk.

If you are not satisfied with our response, you can complain to the ICO.

The ICO’s address:

Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Helpline number: 0303 123 1113
ICO website: https://www.ico.org.uk

Author: Phillip Cammish
Date: 07/06/2024
Version: V1.0