We work with many patient advocacy groups and attend many of their conferences. More and more of them are creating and growing patient registries. A registry collects key information about patients. Some just have data, others include results of blood tests, etc. Registries are important as researchers can discover many clues to treatment from this accumulation of facts.
As you may know, we also collect patient information at patient events. Our is not a registry, it is a panel so that we can invite patients and their caregivers to appropriate surveys. Sometimes advocacy groups think we are competing against their registries. But no! They both serve different purposes. There is nothing preventing patients from signing up both for your registry as well as for our research panel.
We support patient registries. In fact, we make this offer – we’ll invite our panel members to join your registry at no charge. Just contact us. We know how important patient registries are, and we are committed to help!