Privacy Policy
Scope
This policy governs data collection and use on the OCRA Research Exchange, including the Living Lab, Discovery Lab, and Research Pulse platforms at researchexchange.ocrahope.org. The main OCRA website at ocrahope.org is governed by a separate privacy policy at ocrahope.org/privacy. By using the Research Exchange, you accept the practices described here. OCRA may update this policy at any time; continued use constitutes acceptance.
Information We Collect
Information You Provide
- Newsletter subscription: email address and communication preferences
- Donations: name, contact information, and payment details (processed by third-party payment processors)
- Contact forms: name, email, and message content
Information Collected Automatically
- Device and browser information
- Usage data (pages visited, time spent, referring URLs)
- IP address and approximate geographic location
- Cookies and similar tracking technologies
Living Lab Data
Collection, use, and protection of data submitted through Living Lab enrollment — including health, diagnosis, and treatment information — is governed exclusively by the Living Lab Informed Consent document, which participants review and sign during enrollment. That document is IRB-approved and controls in all matters relating to research participation data. For questions specific to Living Lab data, contact LivingLab@ocrahope.org.
How We Use Your Information
We use non-Living Lab information to:
- Operate and improve the Research Exchange
- Communicate research updates and news
- Process donations and provide tax receipts
- Analyze usage and improve user experience
- Comply with legal obligations
Data Sharing
We do not sell your personal information. We may share information with:
- Service providers assisting our operations (under confidentiality agreements)
- Legal authorities when required by law
Sharing of Living Lab research data is governed by the Informed Consent document and subject to Governance Committee approval.
Your Rights
Depending on your location, you may have the right to access, correct, or request deletion of your personal data, and to opt out of marketing communications. To exercise these rights, contact LivingLab@ocrahope.org. Rights related to Living Lab research participation — including withdrawal — are governed by the Informed Consent document.
Cookies and Tracking
We use cookies and similar technologies to enhance your experience and analyze traffic. You can manage cookie preferences through your browser settings, though essential cookies required for platform functionality cannot be disabled.
Data Security
We implement industry-standard security measures:
- TLS/SSL encryption in transit and at rest
- Access controls restricted to authorized personnel
- Regular security audits
No internet transmission is 100% secure; you provide information at your own risk.
Third-Party Platform — Discovery Lab
Research data accessed through the Discovery Lab is hosted and processed on the Cirro Bio platform (ocra.cirro.bio), operated by Cirro Bio, Inc. Data security, storage, and handling within that environment are governed by Cirro Bio's privacy policy and security practices, including their Data Use Agreement and, where applicable, a Business Associate Agreement for HIPAA-covered data. OCRA is not responsible for Cirro Bio's data practices. Researchers should review Cirro Bio's policies before uploading or accessing data on that platform.
Children's Privacy
The Research Exchange is not intended for individuals under 18. We do not knowingly collect personal information from minors.
Contact
Questions about this policy or our data practices:
Email: info@ocrahope.org
Website: ocrahope.org/contact