In the fast-paced world of medical research, patient advocacy groups have emerged as powerful drivers of change. One critical ingredient in their recipe for success is patient registries. These tools offer a direct relationship between patients and researchers, propelling medical advancements and accelerating the search for better treatments. Our newly released whitepaper, titled "Connecting communities: Engaging patients in registries for long-term impact," shares strategies and insights for patient advocacy groups that want to create impactful patient registries.
Through these registries, patient communities exhibit their determination to push research boundaries and demand improved treatments. Our whitepaper dives into crafting participant-centric registries that strike the delicate balance between robust engagement and the scientific rigour demanded by researchers. These strategies ensure that the registry isn't merely a passive repository but a sustainable, dynamic platform where patients willingly share their health data in exchange for real value.
We also discuss innovative approaches like federated registries and participant portals. These concepts streamline research efforts, enhance collaboration, and foster participant engagement.
For more information, download the whitepaper below!