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International Rapid-onset Obesity With Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation (ROHHAD) Registry
International Rapid-onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation (ROHHAD) REDCap Registry
Who can join
All ages · All sexes
Full eligibility criteria
Inclusion Criteria: * Clinical diagnosis of suspected ROHHAD * Clinical diagnosis of confirmed ROHHAD Exclusion Criteria: * Clinical diagnosis not consistent with ROHHAD
About the study
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.
What is being tested
- ROHHAD (genetic)
Sponsor: Ilya Khaytin · Participants: 1,000 · Started: Jun 1, 2013
Contact the study team
- Casey Rand, BS · Phone: 312.227.3300
Official record on ClinicalTrials.gov — NCT03135730
Locations in the U.S.
| Illinois | Ann & Robert H. Lurie Children's Hospital of Chicago and the Stanley Manne Children's Research Institute, Chicago |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.