NON-STOP Privacy Policy

This Privacy Policy outlines how we collect, use, and protect personal information in relation to the NON-STOP (NON-Surgical Treatment Of Perthes’ Disease) mobile application ("the App"). We are committed to ensuring the privacy and security of all users' personal information.

1. Safety Reporting

1.1. While the research team has not identified any potential for serious adverse events (SAE) given the nature of the study, any safeguarding issues that may arise during the use of the app will be escalated to the Principal Investigator (PI) at the local site, who will follow their local policy.

2. Data Management

2.1. All members of the research team will comply with the General Data Protection Regulation (GDPR) and Data Protection Act 2018 when handling personal information. Information collected during the study will be kept confidential unless there are legal or safeguarding concerns.

2.2 App-use data will be exported by the app development company (HMA) and will not be identifiable.

3. Use of the App

3.1 The NON-STOP app is intended to provide information about Perthes’ Disease and advice on self-management, including physiotherapy exercises and activity tracking. Participants will use the app for six weeks as part of the study.

3.2 Some participants will be asked questions about their experience with the app after the six-week period to evaluate its effectiveness.

3.3 Results will be shared with participants and the wider community through various means, including posters and other engaging formats.

4. Children's Privacy

4.1 The NON-STOP app is intended for use by children with Perthes’ Disease and their families. We do not knowingly collect personal information from children under the age of 13 without parental consent which has been obtained for every user of the NON-STOP app. If we become aware that personal information has been collected from a child without parental consent, we will take steps to delete that information.

5. Contact Information

5.1 If you have any questions or concerns about this Privacy Policy, please contact the research team at University of Leeds.

6. Changes to Privacy Policy

6.1 We reserve the right to update or modify this Privacy Policy at any time without prior notice. Any changes will be effective immediately upon posting the revised policy on the App.

Last updated: 11th March 2024