“Registries for Rare Diseases: Involve the Patient” http://www.medscape.com/
The CCHS Network One World Registry collects disease-specific natural history data about individuals with CCHS, with the goal of improving the understanding of CCHS and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
If you would like access to the CCHS NOW Registry data for a research project, please contact our registry administrator at firstname.lastname@example.org. Access to CCHS NOW Registry data is contingent upon project approval by the CCHS NOW Registry Advisory Committee.