Condition: Congenital Central Hypoventilation Syndrome · Congenital Central Hypoventilation · CCHS · Sponsor: Debra Weese-Mayer
Congenital central hypoventilation syndrome (CCHS) is a rare disorder of autonomic and respiratory regulation that frequently alters oxygen delivery to the brain. In CCHS, neurocognitive function has been of great concern because of the potential for repeated hypoxemia and hypercarbia in activities of daily living in addition to hypoventilation with related hypoxemia and hypercarbia during sleep. As the world's leading referral center for CCHS, the Center for Autonomic Medicine in Pediatrics (CAMP) is engaged in ongoing research to identify factors that impact neurocognitive performance in patients with CCHS in order to optimize clinical management and improve long term neurocognitive outcomes. The purpose of this IRB-approved research study is to implement the NIH Toolbox as a standard measurement of cognitive health in patients with CCHS. Further, the study aims to determine how intrinsic and extrinsic disease factors such as age at diagnosis, PHOX2B mutation type and genotype, and nature of past and present artificial respiratory intervention affect the NIH Toolbox Cognitive scores of individuals with CCHS. Eligible participants will complete a 45-minute NIH Toolbox assessment and parents (or adult participants) will complete an associated, 15-minute Research Electronic Data Capture (REDCap) questionnaire.
This description comes directly from the study's public registry record.
Casey Rand, BS · 312-227-3300 · crand@luriechildrens.org
Erin S Lonergan, BS · CAMP@LurieChildrens.org
Always discuss trial participation with your own doctor first.
| Children's Hospital Los Angeles | Los Angeles, California, United States | Recruiting |
| Ann & Robert H. Lurie Children's Hospital of Chicago | Chicago, Illinois, United States | Recruiting |
| Children's Hospital of Philadelphia | Philadelphia, Pennsylvania, United States | Enrolling By Invitation |
| Seattle Children's Hospital | Seattle, Washington, United States | Recruiting |
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Source record: clinicaltrials.gov/study/NCT03568669