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International Congenital Central Hypoventilation Syndrome (CCHS) Registry and CCHS SHARE
International Congenital Central Hypoventilation Syndrome (CCHS) REDCap Registry and CCHS Secure Health-hub Advancing Research Efforts
Who can join
All ages · All sexes
Full eligibility criteria
Inclusion Criteria: * Individuals with PHOX2B mutation-confirmed CCHS. Exclusion Criteria: * Individuals without PHOX2B mutation-confirmed CCHS.
About the study
The Center for Autonomic Medicine in Pediatrics (CAMP), in collaboration with leading CCHS clinicians, scientists, and patient advocacy groups around the world has built the first International CCHS (Congenital Central Hypoventilation Syndrome REDCap (Research Electronic Data Capture) Registry. This registry is an international collaboration to capture CCHS natural history data with CCHS patients and their physicians recruited from around the world. This registry is part of a CCHS natural history study that includes the CCHS Secure Health-hub Advancing Research Efforts (CCHS-SHARE), a natural history data platform shared with the broader CCHS research and patient community to house extensive longitudinal, de-identified data. Inclusion of registry data in CCHS-SHARE is optional.
The purpose of this IRB-approved research study is to gain a better understanding of the natural history of CCHS, including the various clinical manifestations of CCHS with advancing age, and as related to each patient's specific PHOX2B mutation. With a better understanding of CCHS natural history, we will be able to better anticipate healthcare needs and to provide more accurate guidelines to healthcare providers world-wide in caring for patients with CCHS.
The study aims to obtain detailed phenotypic information (information about health and well-being) on patients with CCHS and their families. Participation would require filling out a confidential survey that asks questions regarding phenotype and past medical history. Involvement in the project is completely voluntary and there is no compensation for taking part. However, this project will help us learn more about this disease, with the goal of advancing treatment.
Sponsor: Ilya Khaytin · Participants: 1,000 · Started: Jun 24, 2013
Contact the study team
- Casey Rand, BS · Phone: 312-227-3300
Official record on ClinicalTrials.gov — NCT03088020
Locations in the U.S.
| Illinois | Ann & Robert H. Lurie Children's Hospital of Chicago and the Stanley Manne Children's Research Institute, Chicago |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.