The HEROIC Registry is a patient-centric database with a lot of important information about Lynch Syndrome. HEROIC Mosaic is a way to use this data to answer your top priority research questions!
Community Engaged Network for All (CENA)
Community Engaged Network for All (CENA) is one of 29 projects funded by the Patient Centered Outcomes Research Institute (PCORI) to form a new national resource that will accelerate health research. The new network, which involves millions of Americans, is called PCORnet. Genetic Alliance leads this project, which is a collaborative of eleven disease advocacy organizations, the University of California San Francisco, the University of California Davis, and Private Access.
JS-LIFE is a database designed and supported by the Joubert Syndrome and Related Disorders Foundation (JSRDF) to advance research on the health and well-being of people with Joubert Syndrome. We invite you to collaborate with JS-LIFE participants and their families, disease advocates, medical researchers, and healthcare providers to design a research study to address important issues for people living with Joubert Syndrome. The research study will use information collected and shared in the JS-LIFE database.