Patient advocacy groups can empower medical progress by building robust patient registries. In our latest whitepaper, we discuss how to build a registry focused on engagement and sustainability. We explore: 

• Strategies to create participant-first registries that balance engagement and scientific rigour, driving sustained community involvement.
• The power of community-driven planning and ongoing dialogue to build trust, transparency, and long-term registry sustainability.
• Innovative approaches like federated registries and participant portals that streamline research efforts, enhance collaboration, and boost participant engagement.

Download the whitepaper to learn more!