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NCT03088020 · ClinicalTrials.gov registry record
International Congenital Central Hypoventilation Syndrome (CCHS) Registry and CCHS SHARE
A clinical trial of Congenital Central Hypoventilation Syndrome, sponsored by Debra Weese-Mayer.
- Recruiting
- Registry status
- 1,000
- Enrollment target
- 1
- Study location
NCT03088020: Recruiting study of Congenital Central Hypoventilation Syndrome, sponsored by Debra Weese-Mayer.
NCT03088020 is a study of Congenital Central Hypoventilation Syndrome that is actively recruiting participants, run by Debra Weese-Mayer. The registered enrollment target is 1,000 participants. The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT03088020, a study of Congenital Central Hypoventilation Syndrome, is actively recruiting participants, sponsored by Debra Weese-Mayer.
- RECRUITING
- Registry status
- 1,000 participants
- Enrollment target
- 1
- Study location
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.
Primary Outcome
Collection of longitudinal disease history in 400 CCHS patients
Conditions Studied
Study Locations (1)
Illinois
- Ann & Robert H. Lurie Children's Hospital of Chicago and the Stanley Manne Children's Research Institute - Chicago
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 1,000 participants |
| Start Date | 2013-06-24 |
| Est. Completion | 2032-12-31 |
What NCT03088020 shows while recruiting
NCT03088020 is an observational study that tracks outcomes without assigning an intervention. Its 1,000 participants enrollment target places it among the larger protocols in the corpus.
The record links to 1 condition, with Congenital Central Hypoventilation Syndrome appearing as the primary indexed condition, and to 0 interventions.
NCT03088020 reports a single indexed study location in Illinois.
Frequently Asked Questions
What is clinical trial NCT03088020 about?
NCT03088020 is a clinical study titled "International Congenital Central Hypoventilation Syndrome (CCHS) Registry and CCHS SHARE". 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...
What is the current status of trial NCT03088020?
This trial is currently recruiting. The enrollment target is 1,000 participants. The study started on 2013-06-24. Estimated completion is 2032-12-31.
What conditions does trial NCT03088020 study?
This clinical trial studies the following conditions: Congenital Central Hypoventilation Syndrome.
Who is sponsoring clinical trial NCT03088020?
This trial is sponsored by Debra Weese-Mayer, which has 3 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT03088020 being conducted?
This trial has 1 study location across Illinois. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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