The CCHS Network is a non-profit, tax-exempt organization registered in the United States. The primary purpose of the CCHS Network is to assist each other, and especially new CCHS families, in coping with issues that arise in living with a family member who is technology (ventilator) dependent and whose respiratory status and autonomic systems must be regularly monitored. Educating families and medical professionals about CCHS and supporting research are other guiding principles of the CCHS Network.
The purpose of this project is to longitudinally study the disorder Congenital Central Hypoventilation Syndrome (CCHS) in order to fill research gaps to help medical researchers better understand CCHS disease progression over time and to support drug development programs. The CCHS Network One World 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.
What is the CCHS Network One World Registry?
The CCHS Network One World Registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies. The CCHS Network One World Registry serves to:
What types of data will be collected in the CCHS Network One World Registry? Is the data secure?
The CCHS Network One World Registry collects data on the following topics:
The CCHS Network One World Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks. Communication between the registry platform application server and the database are also encrypted.