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).

“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.

Learn how to register for CCHS NOW here.

Please refer to this FAQ document to understand more about the Registry.

Registry Security Statement

Please contact The CCHS NOW Registry at CCHSNOWRegistry@cchsnetwork.org for more information about this project.

NHS Registry Committee Responsibilities

  • Advise on the development and revisions to the study protocol
  • Advise on data elements
  • Advise on governance issues related to the study protocol
  • Advise on patient recruitment and engagement
  • Advise on data management, sharing and analysis
  • Advise on research collaborations
  • Advise on strategic direction of study

Current Board

  • Vandana Dole, Ph.D., CCHS Network
  • Linda Dokas, Ph.D., CCHS Network
  • Melinda Riccitelli, Ph.D., CCHS Network
  • Ian Hatfield, Patient Advocate, CCHS Network
  • Thomas Keens, MD, Professor of Pediatrics, Physiology and Biophysics; Director, Cystic Fibrosis Care Center at Los Angeles Children’s Hospital
  • Ajay Kasi, M.D. Pediatric Pulmonologist at Children’s Healthcare of Atlanta and Assistant Professor at Emory University School of Medicine