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

Conditions

• ROHHAD
• Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation

Eligibility Criteria

Sex

ALL

Age

N/A - N/A

Healthy Volunteers

Not accepted

Interventions

• ROHHAD — GENETIC
  Suspected and Confirmed ROHHAD cases

Study Details

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.

Key Dates

Start date

Jun 1, 2013

Status verified

Aug 2024

Primary completion

Dec 31, 2034

Completion

Dec 31, 2039

Study Design

Enrollment

1,000 participants (estimated)

Primary Outcome Measure

longitudinal clinical history in 200 ROHHAD patients [ Time Frame: 10 years ]

Central Contacts

• Casey Rand, BS
  312.227.3300
  [email protected]
• Erin S Lonergan, BS
  [email protected]

Locations (1)

Find similar trials in Chicago, IL