For Researchers
The CCHS Network One World Registry collects disease-specific natural history data about individuals with Congenital Central Hypoventilation Syndrome, with the goal of improving the understanding of Congenital Central Hypoventilation Syndrome and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
- Clinical trial participation
We are interested in sharing our data with you! If you would like access to the CCHS Network One World Registry data for a research project, please contact our registry administrator at oneworldregistry@cchsnetwork.org for more information. Access to the CCHS Network One World Registry data is contingent upon project approval by the CCHS Network One World Registry Advisory Board.