Our multidisciplinary team of physician-scientists conducts various research projects to help promote patient care and better educate families. We hope our research efforts will improve treatment for children with conditions that affect the autonomic nervous system.
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.
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.
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.
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 take 3 photographs from the left and 3 from the right.
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.
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.
The Effect of Center for Autonomic Medicine in Pediatrics (CAMP) Evaluations on Health Outcomes for Patients with Respiratory and Autonomic Disorders of Infancy, Childhood and Adulthood (RADICA)
