DMD Hub Central Recruitment Pilot Project

Privacy notice

The DMD Hub Recruitment Pilot Project

Newcastle University is collecting your data to facilitate your participation in the DMD Hub Recruitment Pilot 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 and special category data about you from the following sources:

  • From you, when you register on the DMD Hub Recruitment Pilot Project website.
  • From you, when you contact us via email, phone or post.
  • From medical or health care professionals when you have given permission for us to contact them.

Sharing information

The DMD Hub Recruitment Pilot Project may need to share your personal data with third parties necessary for the purpose of potential recruitment to research studies in the UK. Third parties we share information with are:

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

Restricted processing

You have the right to request we restrict processing of your personal data and special category data. However, this may affect the process of using the DMD Hub Recruitment Pilot Project as a mechanism for communicating your information to any trials sites (who contact the DMD Hub to request information about DMD Hub Recruitment Pilot Project participants who may want to participate in research studies). 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: dmdhub@ncl.ac.uk

Retention periods

The DMD Hub Recruitment Pilot Project 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: dmdhub@ncl.ac.uk

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/

Author: Phillip Cammish

Date: 29/11/2021

Version: V1.0