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

Status: Recruiting
Location: See location...
Intervention Type: Genetic
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• Clinical diagnosis of suspected ROHHAD

• Clinical diagnosis of confirmed ROHHAD

Locations
United States
Illinois
Ann & Robert H. Lurie Children's Hospital of Chicago and the Stanley Manne Children's Research Institute
RECRUITING
Chicago
Contact Information
Primary
Casey Rand, BS
Crand@LurieChildrens.org
312.227.3300
Backup
Erin S Lonergan, BS
CAMP@LurieChildrens.org
Time Frame
Start Date: 2013-06-01
Estimated Completion Date: 2039-12-31
Participants
Target number of participants: 1000
Related Therapeutic Areas
Sponsors
Leads: Debra Weese-Mayer
Collaborators: ROHHAD Fight Inc.

This content was sourced from clinicaltrials.gov