BMD Hub Central Recruitment Database

Privacy Notice

BMD Hub Central Recruitment Database

Newcastle University is collecting your data to facilitate your participation in the BMD 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/

Data will be retained in accordance with the University’s Records Management Schedule guidance.
This notice explains how we will collect and use your personal data and special category data. Identifiable data will not usually be shared with third parties (separate legal entities to the University) without your explicit consent, except when the University is required to by law or where processing is necessary to protect vital interests.

If you would like more information about how we manage personal data more generally, including your rights under law, and the contact details of the University’s Data Protection Officer, please see our website: https://www.ncl.ac.uk/data.protection/

We obtain personal data about you from the following sources:

  • From you, when you agree to participate in the BMD Hub Central Recruitment Database Project.
  • From you, when you contact us via email, phone or post.

Sharing information

Within Newcastle University

  • The BMD 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 in to Becker Muscular Dystrophy who have been approved by the BMD Hub Central Recruitment Pilot Project steering committee.
  • Health Care Professionals based at neuromuscular centre(s) you inform us about on the BMD Hub Recruitment Pilot Project questionnaire, where you receive treatment for Becker Muscular Dystrophy.
  • Anonymised data shared with organisations such as patient organisations and industry partners who have been approved by the BMD Hub Central Recruitment Database steering committee.

Restricted processing

You have the right to request we restrict processing of your personal data.  If you wish to restrict processing of your personal data, please put your request in writing and send it to the postal or email address below:

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: [email protected]

Retention periods

the BMD 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 five years after the project has ended.

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 any concerns with regard to the way your personal data is being processed, or 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: [email protected]


For further information about 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/