A Secure, GDPR-compliant platform to enable meaningful patient participation in clinical research
TEDDY Network has integrated the Patient Voice Database into the TEDDY website. This secure, patient-centred, research-oriented platform developed by Curewiki in collaboration with the Patient Expert Center. The Patient Voice Database is GDPR – compliant, and connects patients, families, and caregivers with clinical research opportunities aligned with their health profiles, while enabling research teams to reach eligible participants more efficiently.
The Patient Voice Database is designed not merely as a registry but as a data infrastructure that supports high-quality research and patient empowerment. It enables individuals to safely register health information and receive opportunities such as clinical trials, surveys, and panel discussions that are relevant to their needs, while maintaining full control over how and when their data is used.
What Users Receive?
Upon signing up through the platform, participants can:
- Receive email notifications when clinical trials or research opportunities match their profile.
- Discuss potential participation with their healthcare provider.
- Join structured opinion polls about illness or about topics that affect many patients, such as their satisfaction with care, job retention or loss, or financial aspects.
- Participate in qualitative group discussions with peers.
- Allow a caregiver to register on their behalf if needed.
Professional Capabilities and Data Governance
The platform operates with strict adherence to GDPR and professional data protection standards. Key features that ensure its research utility and reliability include:
- Encrypted, secure data storage: patient information remains private and is never resold.
- Participant consent control: profiles are only shared with research teams after explicit consent.
- Non-binding engagement: joining the database is voluntary and free, with users able to delete their profile at any time.
- Targeted matching: opportunities presented are aligned with the health profile provided by the user.
These professional safeguards make the Patient Voice Database a credible tool for researchers seeking real-world evidence and for patient organisations advocating for more inclusive study participation.
A Step Toward Patient-Driven Research
TEDDY reinforces its commitment to evidence-based, patient-centered paediatric research, by making the Patient Voice Database accessible through TEDDY website. The integration expands access to a professional database that aligns patient needs with scientific inquiry, ultimately enhancing research relevance and inclusivity.
Patients, families, or caregivers who wish to share their perspectives and access tailored research opportunities can register for the Patient Voice Database via the TEDDY website here.