CCHS Network One World (NOW) Registry
In 2016 the CCHS Network was chosen, after a competitive selection process, to partner with the National Organization of Rare Disorders (NORD), to develop a Natural History Study of CCHS: CCHS Network One World Registry (CCHS NOW Registry).
The CCHS NOW Registry is a longitudinal study that aims to fill research gaps to help medical researchers better understand CCHS disease progression over time and to support drug development programs. The CCHS NOW Registry is also set-up to share common data elements and questions with other rare diseases to better understand rare disease complexities and provide a generalized baseline for future efforts.
The project is funded by NORD, supported in part by a cooperative agreement with the U.S. Food and Drug Administration (FDA).
To join the study go to cchsnowregistry.iamrare.org. Once there create an account by clicking the green “Register” button.
Learn how to register for CCHS NOW here.
Please refer to this FAQ document to understand more about the Registry.
Please contact The CCHS NOW Registry at CCHSNOWRegistry@cchsnetwork.org for more information about this project.
NHS Registry Committee Responsibilities