Privacy Policy for Spinal Research Trial Tracker
Introduction
Spinal Research is committed to protecting the privacy of individuals who register and participate in our Trial Tracker. This Privacy Policy outlines our practices regarding the collection, use, storage, and protection of your personal and sensitive data.
Data Controller
Spinal Research, located in London, UK, is the data controller responsible for your personal information. Contact details are provided at the end of this policy for any privacy-related enquiries.
What Data We Collect
We collect the following types of information from you when you register:
- Personal Data: Includes your name, address, email address, date of birth, and gender.
- Sensitive Data: Includes details about your spinal cord injury such as the level of injury, severity (AIS scale), type of injury (complete/incomplete), ongoing physio/rehab, and your medical history relevant to the injury.
How We Collect Data
Data is collected directly from you through a secure online form provided by Formassembly. You provide this information voluntarily to participate in clinical trials relevant to your condition.
Purpose and Legal Basis for Processing
- Purpose: Your data is processed to match you with suitable clinical trials, manage trial applications, and provide you with information regarding potential clinical trials.
- Legal Basis: We process your personal data based on your consent (GDPR Article 6(1)(a)) and for the purposes of legitimate interests pursued by Spinal Research (GDPR Article 6(1)(f)). We process sensitive personal data based on your explicit consent (GDPR Article 9(2)(a)).
How We Use Your Data
- To match you with clinical trials: We use your data to identify clinical trials that match your injury profile and preferences.
- To communicate with you: We may use your contact details to send you notifications about trial opportunities and updates about our services.
Data Sharing and Disclosure
- Within Spinal Research: Access to your data is restricted to personnel who need the information to perform their job functions.
- With Researchers: We do not share your personal or sensitive data directly with researchers. Any interaction with trial researchers will occur only if you respond to a trial participant call and provide your consent to share specific details.
- Third-Party Service Providers: We may share your data with service providers who assist us in conducting our operations (e.g., data management services). These providers are obligated to protect your data and are not permitted to use it for any other purposes.
Data Security
We implement robust technical and organisational measures to protect your data from unauthorised access, alteration, disclosure, or destruction. These include encryption, secure data storage facilities, and regular security audits.
Your Rights
Under the GDPR, you have various rights regarding your personal data:
- Access: You can request access to the personal data we hold about you.
- Rectification: You can request correction of inaccurate data.
- Erasure: You can request the deletion of your data when it is no longer necessary for the purposes collected.
- Restriction: You can request the restriction of processing under certain circumstances.
- Data Portability: You can ask for the transfer of your data to another organisation.
- Objection: You can object to the processing of your data.
- Consent Withdrawal: You have the right to withdraw your consent at any time.
Data Retention
We retain your personal data only as long as necessary for the purposes it was collected for, as outlined in our Data Retention Policy.
Changes to the Privacy Policy
We may update this policy from time to time. Any changes will be posted on our website with an updated revision date.
Contact Us
If you have any questions or concerns about this Privacy Policy or your data privacy, please contact us at:
- Address: 201 Borough High Street, London, SE1 1JA
- Email: info@spinal-reasearch.org
- Phone: 0203 8247 400
Revision Date
This Privacy Policy was last revised on 05/06/2025.
