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NCT03135730 · ClinicalTrials.gov registry record

International Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation (ROHHAD) Registry

A clinical trial of ROHHAD and Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation, sponsored by Debra Weese-Mayer.

Recruiting
Registry status
1,000
Enrollment target
1
Study location

NCT03135730: Recruiting study of ROHHAD and Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation, sponsored by Debra Weese-Mayer.

NCT03135730 is a study of ROHHAD and Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation 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.

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The verdict

NCT03135730, a study of ROHHAD and Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation, 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) has collaborated with doctors from around the world to build the first International ROHHAD (Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation) REDCap (Research Electronic Data Capture) Registry. This registry is an international collaboration with ROHHAD patients and their physicians recruited from around the world. The purpose of this IRB-approved research study is to gain a better understanding of the various health problems ROHHAD patients face with advancing age, and how these relate to each patient's specific medical course. With a better understanding of specific ROHHAD and associated clinical manifestations, 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 ROHHAD. The study aims to obtain detailed phenotypic information (information about health and well-being) on patients with ROHHAD. Participation would require filling out a confidential survey that asks questions regarding health 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 devastating disease, with the goal of advancing treatment.

Primary Outcome

phenotype inclusive of control of breathing and autonomic regulation

Interventions

  • GENETIC ROHHAD

Study Locations (1)

Illinois

  • Ann & Robert H. Lurie Children's Hospital of Chicago and the Stanley Manne Children's Research Institute - Chicago

Trial Details

FieldValue
Enrollment Target 1,000 participants
Start Date 2013-06-01
Est. Completion 2039-12-31
Debra Weese-Mayer

3 total trials

What NCT03135730 shows while recruiting

NCT03135730 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 2 conditions, with ROHHAD appearing as the primary indexed condition, and to 1 intervention - of which ROHHAD is the first listed.

NCT03135730 reports a single indexed study location in Illinois.

Frequently Asked Questions

What is clinical trial NCT03135730 about?

NCT03135730 is a clinical study titled "International Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation (ROHHAD) Registry". The Center for Autonomic Medicine in Pediatrics (CAMP) has collaborated with doctors from around the world to build the first International ROHHAD (Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation) REDCap (Research Electronic Data Capture) Registry. This...

What is the current status of trial NCT03135730?

This trial is currently recruiting. The enrollment target is 1,000 participants. The study started on 2013-06-01. Estimated completion is 2039-12-31.

What conditions does trial NCT03135730 study?

This clinical trial studies the following conditions: ROHHAD, Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation.

What interventions are being tested in trial NCT03135730?

The interventions under investigation include: ROHHAD (GENETIC).

Who is sponsoring clinical trial NCT03135730?

This trial is sponsored by Debra Weese-Mayer, which has 3 total clinical trials registered on ClinicalTrials.gov.

Where is trial NCT03135730 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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Source: ClinicalTrials.gov NCT03135730, the US trial registry maintained by the National Library of Medicine. NCT03135730 (large enrollment · single site footprint · recruiting) retrieved and formatted by PlainTrial, see methodology.