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International Congenital Central Hypoventilation Syndrome (CCHS) Registry and CCHS SHARE

NCT03088020 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 1000

Last updated 2024-08-09

No results posted yet for this study

Summary

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.

Conditions

  • Congenital Central Hypoventilation Syndrome

Sponsors & Collaborators

  • Northwestern University Feinberg School of Medicine

    collaborator OTHER

  • The Chicago Community Trust

    collaborator OTHER

  • Debra Weese-Mayer

    lead OTHER

Principal Investigators

  • Debra E Weese-Mayer, MD · Ann & Robert H Lurie Children's Hospital of Chicago

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2013-06-24
Primary Completion
2031-12-31
Completion
2032-12-31

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT03088020 on ClinicalTrials.gov