Registry Tracking Health Over Time in People With ROHHAD
Collects health history from people with ROHHAD, a rare hypothalamic disorder, through a survey.
Plain-language title generated from the registry record
Registry title: International Rapid-onset Obesity With Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation (ROHHAD) Registry
Key facts
- Where
- Chicago, United StatesSee the site
AI summary: who the study is looking for
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people with suspected or confirmed ROHHAD. They fill out a confidential survey about their health and past medical history.
- Sex
- All sexes can join.
- Disease stage
- A clinical diagnosis of suspected or confirmed ROHHAD (rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation).
Main reasons for not taking part
- A clinical diagnosis that is not consistent with ROHHAD
Read by machine on 12 November 2026.
Where in United States
- Ann & Robert H. Lurie Children's Hospital of Chicago and the Stanley Manne Children's Research InstituteChicago, United StatesContact: Casey Rand, BSTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial details
- Who runs it
- Ilya Khaytin
- Trial code
- NCT03135730
- Record updated
- 3 September 2026
- Original description
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.Read full original descriptionShow less
International Rapid-onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation (ROHHAD) REDCap 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 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.
Inclusion: Clinical diagnosis of suspected ROHHAD; Clinical diagnosis of confirmed ROHHAD.
Exclusion: Clinical diagnosis not consistent with ROHHAD.