In 2016, AliveAndKickn launched the HEROIC Registry, a patient-driven registry to collect real world and genomic data on patients with Lynch syndrome globally. Recently, AliveAndKickn started a collaboration with the University of California, San Francisco, to launch The HEROIC Mosaic Research Community, a research opportunity for families, supporters, and researchers of Lynch syndrome to collectively provide input to launch studies investigating Lynch syndrome.
Mosaic is an online crowdsourcing approach to design research studies. Instead of researchers designing and implementing studies themselves, Mosaic allows patients, researchers, and community members to collaborate online in writing a research protocol and conducting the research. With a large group of researchers of Lynch syndrome participating, this project was chosen to be part of the Biden Cancer Initiative’s Commitment to progress.