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

Recruiting now

Conditions studied: ROHHAD, Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation

In brief

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.

Key facts

Study ID

NCT03135730

Run by

Debra Weese-Mayer

People needed

1000

Starts

2013-06-01

Expected to finish

2039-12-31

Last updated by the study team

2025-02-20

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Clinical diagnosis of suspected ROHHAD
• Clinical diagnosis of confirmed ROHHAD

You may not qualify if…

• Clinical diagnosis not consistent with ROHHAD

Where it is running

• Ann & Robert H. Lurie Children's Hospital of Chicago and the Stanley Manne Children's Research Institute — Chicago, Illinois, United States (enrolling)

Full record on ClinicalTrials.gov

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