Privacy Policy
Last updated: 25 October 2026
MaumivuCare ("the app") is a mobile programme that teaches CBT-based pain self-management skills to young people living with Sickle Cell Disease, developed and operated as part of an academic research study. This policy explains what information we collect, why, and how it is protected.
1. Information we collect
- Account details — a study-assigned participant ID, phone number, and a PIN used to sign in.
- Demographic information — age, sex, and study site, collected during enrolment.
- Health and programme data — pain diary entries (intensity, location, triggers, mood, sleep, coping strategies), CBT exercise responses (thought records, relaxation sessions, goals, coping plans), and safety-related check-ins.
- Feedback — satisfaction and usefulness ratings, and any comments you choose to submit.
- Usage information — which lessons and exercises you complete, and when, so your progress can be saved and shown back to you.
2. How we use this information
- To provide the app's core features — saving your diary entries, tracking your CBT progress, and showing your own history back to you.
- To let the research team monitor participant safety, including following up on any concerning symptoms you report.
- To analyse programme engagement and outcomes for the research study, always in de-identified or aggregated form for any report or publication.
- To improve the app and its content based on feedback.
3. Who can access your information
Your data is only accessible to the research team and clinical advisors directly involved in the study, under the procedures approved by the study's ethics review. We do not sell your data, and we do not share it with advertisers or unrelated third parties. De-identified, aggregated data may be used in academic publications or presentations, without information that could identify you personally.
4. Data storage and security
Data is stored on secured servers accessible only to authorised study personnel. Reasonable technical and administrative safeguards are used to protect your information from unauthorised access, loss, or misuse.
5. Participants under 18
Some participants in this study are under 18 years old. For minors, enrolment requires the consent process described during sign-up, consistent with the study's approved ethical procedures for research involving minors.
6. Your choices
You may withdraw from the study at any time. To request withdrawal, correction of your information, or deletion of your account and associated data, contact us using the details below.
7. Changes to this policy
If this policy changes, the updated version will be posted on this page with a new "last updated" date.
8. Contact us
Questions about this policy or your data can be directed to the MaumivuCare research team: