AliveAndKickn: HEROIC Mosaic Research Community
In 2016, AliveAndKickn launched the HEROIC Registry, a patient driven registry to collect real world and genomic data on Lynch syndrome patients globally. To build upon that success, they are announcing a partnership with the University of California San Francisco (UCSF) to launch The HEROIC Mosaic Research Community, a novel research opportunity for the AliveAndKickn community to collaborate with families, supporters, and top Lynch syndrome researchers to create new research projects that address Lynch Syndrome questions most important to the patients. Mosaic is an online crowdsourcing approach to design research studies. Instead of researchers designing and implementing studies, Mosaic allows patients, researchers, and community members to collaborate online in writing a research protocol and conducting the research. AliveAndKickn’s mission is to improve the lives of individuals and families affected by Lynch syndrome and associated cancers through research, education and screening. Individuals with a Lynch syndrome hereditary cancer genetic mutation have high risks of developing colorectal cancer, endometrial cancer, and various other types of cancers, often at a young age. One in every 279 Americans has Lynch syndrome, as much as 95% of these people are not aware they have it.