Research

The Center for Autonomic Medicine in Pediatrics (CAMP) at Lurie Children's has collaborated with 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 clinical manifestations of ROHHAD with advancing age, and as related to each patient’s specific clinical course. With a better understanding of specific ROHHAD and associated disease 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.

Participate in the Study

The study aims to obtain detailed phenotypic information (information about your child’s health and well-being) on patients with ROHHAD. Participation would require filling out a confidential survey that asks questions regarding the patient’s phenotype and past medical history. Your involvement in the project is completely voluntary and there is no compensation for taking part. However, we feel this project will help us learn more about this devastating disorder, with the goal of advancing treatment. We appreciate your help.

Frontal View Photographs

Please take at least 3 frontal view photographs.
Once the position of the child’s face is set, please use a digital camera or cell phone camera to take the photographs. Please stand close enough to the child that his or her face fills most of the viewfinder. You may have to adjust the position of the camera to ensure that it is at the same height as the child’s face. Make sure that the ruler is visible in the photographs.

• Please have the child being photographed wear a solid-colored t-shirt with no turtle neck or collar.
• If the child has long hair please make sure to secure it behind their face and ears. Their hairline, forehead, and jaw must be completely visible.
• Have the child stand in front of a blank white wall.
• Ask someone to hold a 12” ruler above the child’s collar bone, facing the camera, parallel to the floor.
• Ask the child to keep their eyes open and to look straight ahead.
• Ask the child not to smile but to keep their mouth closed and relaxed.
• In order to properly position how high or low the child’s chin should be tipped, imagine a line from the child’s left cheekbone to his or her ear canal. This imaginary line should be parallel to the floor. 
  
  

Side View Photographs

Please take 3 photographs from the left and 3 from the right.

• Ask someone to hold the 12” ruler just above the child’s shoulder, facing the camera, and parallel to the floor.
• Adjust the position of the camera to capture the child’s profile. Only one eye, one eyebrow, and one ear should be visible.

If you have any questions, please contact CAMP at Lurie Children’s at CAMP@luriechildrens.org or 312.227.3300. If you are interested in having your child participate in this study, please fill out our online form​. Thank you very much for considering participation in this project.​

The Center for Autonomic Medicine in Pediatrics built the first International CCHS (congenital central hypoventilation syndrome​) REDCap (Research Electronic Data Capture) Registry. This registry is an international collaboration with CCHS patients (and their physicians) recruited from around the world.

We are conducting an IRB-approved research study to gain a better understanding of the various clinical manifestations of CCHS with advancing age, and as related to each patient’s specific mutation in the PHOX2B mutation. With a better understanding of specific CCHS PHOX2B mutations and associated disease 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 CCHS.

Participate in the Study

The study aims to obtain detailed phenotypic information (information about your child’s health and well-being) on patients with CCHS. Participation would require filling out a confidential survey that asks questions regarding the patient’s phenotype and past medical history. Your involvement in the project is completely voluntary and there is no compensation for taking part. However, we feel this project will help us learn more about this devastating disease, with the goal of advancing treatment. We appreciate your help.

If you have any questions, please contact CAMP at Lurie Children’s at CAMP@luriechildrens.org or 312.227.3300. If you are interested in having your child participate in this study, please fill out our online form​. Thank you very much for considering participation in this project.