Sikila logo in red with stylized Sickle Shaped S on the left and the word 'Sikila' in bold letters to the right.

Effective: 15th March 2026

Sikila is committed to protecting your data and respecting your privacy. This policy explains what we collect, why, and how it’s used.

1. What We Collect

Essential Data (Always On)

Collected to deliver core features of the Sikila app:

  • Email address and login details

  • Symptom logs (pain, sleep, hydration, meds, transfusion)

  • Device info (OS version, app version)

Usage & Performance Data

To improve the app, we use anonymous analytics (e.g., screen taps, features used, crash logs) that contain no specific health values (PHI).

  • Your Control: You can manage this preference at any time in the App Settings.

  • Note on Consent: Depending on your device platform (iOS or Android), you may be asked to opt-in during onboarding, or you may opt-out via Settings.

Essential Data & App Improvements

When you allow anonymized health data during onboarding, we use it to provide core app features. To keep Sikila accessible and drive medical progress, "improvements" include grouping your completely anonymous logs with others to find health trends. We share and commercialize these anonymous trends with clinical researchers, healthcare providers, and life science partners. Your individual identity is strictly removed and remains private.

2. How We Use Your Data

  • To provide app functionality (essential)

  • To improve user experience (if analytics is enabled)

  • To notify you about reminders (based on your settings)

  • To generate anonymised insights (only with future opt-in)

  • To send you product updates and newsletters (you can opt-out at any time)

Transparency on Data Sharing

We will never sell your personal data (information that identifies you, like your name or email). To fund the Sikila platform and accelerate Sickle Cell research, we may share, license, or sell completely anonymized, aggregated insights to trusted research and healthcare partners.

3. Your Rights

  • Access and export your data

  • Edit or delete your account

  • Withdraw consent for optional data

  • File a complaint with a data protection authority

We follow GDPR and HIPAA-aligned best practices to protect your data.

4. Data Security and Retention

All personal health data is encrypted in transit and at rest. We use secure infrastructure (e.g. AWS) with strict access controls.

We retain personal data only as long as necessary to provide the app’s services or comply with legal obligations. You may request deletion at any time. If you delete your account, your personal profile is permanently removed. Please note that any anonymous data that has already been grouped into finished research reports cannot be extracted or deleted, as it is no longer linked to you.

5. Third-Party Services

We use trusted third-party service providers for hosting and analytics. These providers are contractually required to maintain data security and confidentiality.

6. EU and UK Data Protection Representative

Sikila LLC has appointed Data Protection Representative Limited (trading as DataRep) as its Data Protection Representative in the European Union (EU/EEA) and the United Kingdom (UK).

If you are located in these regions, you may contact our Representative directly regarding any questions or requests concerning your personal data rights:

  • Online Webform: www.datarep.com/data-request

  • Email: datarequest@datarep.com (You must quote "Sikila LLC" in the subject line)

  • Mail: Please refer to our Contact Summary Document for the appropriate mailing address in your specific country. Alternatively, you may mail inquiries to their central EU office: DataRep, The Cube, Monahan Road, Cork, T12 H1XY, Republic of Ireland.

7. Contact Us & General Support

For all general inquiries, technical support, or non-privacy related questions, please contact Sikila directly at: