International registry for Rapid-onset Obesity with Hypothalamic Dysfunction
International Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation (ROHHAD) REDCap Registry
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 |
|---|---|
| Enrollment | 1000 (estimated) |
| Sex | All |
| Sponsor | Ann & Robert H Lurie Children's Hospital of Chicago Academic / other |
| Locations | 1 site (Chicago, Illinois) |
| Trial ID | NCT03135730 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals with a clinical diagnosis of suspected or confirmed ROHHAD.
Not a fit: Patients with clinical diagnoses that are not consistent with ROHHAD may not benefit from this study.
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 performed: 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.
Eligibility criteria
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 this trial is running
Chicago, Illinois
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.