RET Together is a community registry of RET+ patients, built by patients, for everyone: granular consent, real pseudonymization, EU/GDPR hosting, and aggregate results public for patients, doctors and researchers alike. We are building it in public — every step is published here, and every decision can be challenged. Start with the intro article below, then raise your hand .
Our data, together: why we want a patient-built RET registry
In short: Each of us, patients with RET-positive cancer, holds a treasure: our own data – the genetic test, the treatments, the response, the side effects, the progression. Put together, this data would answer the questions that keep us up at night. Today it sits fragmented: part of it in institutional registries we cannot access, part of it in our own drawers. Other patient communities solved this problem by building their own registries – and changed the research on their disease. We believe it is time for the RET community to do the same. This article explains why, what we propose concretely, and how you can register your interest. Nothing is being collected yet – first we want to know how many of us there are. ...