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CCHS Secure Health-hub Advancing Research Efforts (CCHS SHARE)

NCT06554275 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 125

Last updated 2025-07-16

No results posted yet for this study

Summary

The purpose of this study is to capture longitudinal natural history data in Congenital Central Hypoventilation Syndrome (CCHS). This will include capturing standardized clinical data from standard of care assessments at several CCHS referral centers. Funding source-FDA OOPD

Conditions

  • Congenital Central Hypoventilation Syndrome

Sponsors & Collaborators

  • Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital de la Pitié-Salpêtrière

    collaborator UNKNOWN

  • Great Ormond Street Hospital for Children NHS Foundation Trust

    collaborator OTHER

  • Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital universitaire Robert Debré

    collaborator UNKNOWN

  • Ann & Robert H Lurie Children's Hospital of Chicago

    lead OTHER

Principal Investigators

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

  • Maxime Patout, MD · Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital de la Pitié-Salpêtrière

  • Martin Samuels, MD · Great Ormond Street Hospital-London (GOSH)

  • Christophe Delclaux, MD · Assistance Publique - Hôpitaux de Paris (AP-HP) : Hôpital universitaire Robert Debré

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2024-09-01
Primary Completion
2028-06-01
Completion
2028-08-31

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 NCT06554275 on ClinicalTrials.gov