International registry for Rapid-onset Obesity with Hypothalamic Dysfunction
Official title: International Rapid-onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation (ROHHAD) REDCap Registry
Run by Ann & Robert H Lurie Children's Hospital of Chicago · NCT03135730 · Data updated 2026-11-12
This study is creating a global registry to gather health information from people with Rapid-onset Obesity with Hypothalamic Dysfunction (ROHHAD) to help doctors better understand and manage the condition.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 1000 (estimated) |
| Sponsor | Ann & Robert H Lurie Children's Hospital of Chicago Academic / other |
| Locations | 1 site (Chicago, Illinois) |
| Status | Recruiting |
| Started | June 1, 2013 |
| Main results expected | December 31, 2034 |
| Study ends | December 31, 2039 |
| Registry record updated | September 3, 2026 |
| Trial ID | NCT03135730 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals with a clinical diagnosis of suspected or confirmed ROHHAD.
✕Probably not a fit
Patients with clinical diagnoses that are not consistent with ROHHAD may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This study establishes the first international registry for patients with Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation (ROHHAD). It aims to collect detailed health information from ROHHAD patients and their physicians worldwide to better understand the disease's progression and associated health issues. By analyzing this data, the study seeks to improve early recognition of ROHHAD and provide guidelines for healthcare providers in managing these patients. The registry will utilize a secure data capture system to ensure patient confidentiality and data integrity.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis and management of ROHHAD, enhancing patient outcomes.
How similar studies have gone: While the approach of creating a registry for rare diseases is not novel, the specific focus on ROHHAD and its unique challenges presents an opportunity for new insights.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Clinical diagnosis of suspected ROHHAD * Clinical diagnosis of confirmed ROHHAD Exclusion Criteria: * Clinical diagnosis not consistent with ROHHAD
Where it's running
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Ann & Robert H. Lurie Children's Hospital of Chicago and the Stanley Manne Children's Research Institute
Chicago, Illinois, United States Recruiting
Study contacts
- Study coordinator: Casey Rand, BS
- Email: Crand@LurieChildrens.org
- Phone: 312.227.3300
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.