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).
“Our goal is for the 1 in 10 Americans with rare diseases, most of whom are children, to have a treatment and cure,
and we developed NORD’s Natural History Study platform to eliminate challenges standing in the way of that target.”
~NORD President and CEO Peter L. Saltonstall
To join the study go to cchsnowregistry.iamrare.org. Once there create an account by clicking the green “Register” button.
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.
The role of the NHS Registry Committee is to advise the CCHS Network on matters relating to the CCHS NOW Registry, including protocol development; governance structure; patient recruitment and retention; data management, sharing and analysis, publishing of scientific articles pertaining to the NOW Registry; and research collaborations.
NHS Advisory Board will be comprised of 7-9 members: up to 5 members from CCHS Network family community and up to 4 members from professional stakeholder communities.