The Center for Autonomic Medicine in Pediatrics (CAMP) at Ann and Robert H. Lurie Children's Hospital of Chicago is the world’s leading referral center for children with congenital central hypoventilation syndrome (CCHS) and rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation (ROHHAD). Our passion is to improve the lives of children around the world with these rare, debilitating diseases of the autonomic nervous system through improved diagnosis and treatment. We hope that you will join us in this mission by supporting an exciting project currently taking place in CAMP.
The purpose of this IRB-approved research study is to gain a better understanding of the various clinical manifestations of autonomic nervous system (ANS) dysfunction in the pediatric population by obtaining data from healthy controls. With a better understanding of ANS functionality, 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 ANS disorders.
The study aims to collect data on autonomic nervous system function using non-invasive testing in our patients and in healthy controls (for comparison). Participants would be asked to wear non-invasive monitoring devices to record vital signs (body temperature, heart rate, blood pressure, respiratory rate) and how the eye responds to light. Participation also involves filling out a confidential survey that asks questions specific to the autonomic nervous system.
Your involvement in the project is completely voluntary. However, we feel this project will help us learn more about these devastating disorders, with the goal of advancing treatment and care. We appreciate your help.
If you have any questions and/or are interested in having your child participate in this study, please contact Amy Zhou at AZhou@luriechildrens.org or at CAMP at Lurie Children's at 312.227.3300, and we will properly consent you/your child. Thank you very much for considering participation in this project.
We are planning to hold a raffle at the conclusion of this study as a way to say “thank you” to the healthy controls and their families who graciously volunteer their time to help us with the study. Please join us in supporting research of these rare diseases through your support of this raffle. As we will be mailing prizes to participants at the study conclusion, we are seeking contributions such as gift cards, coupons and other small items. Your tax-deductible contribution will be acknowledged on our website.
We hope that you will join us in our efforts to improve the lives of our patients. If you have any questions and/or are interested in supporting this research with a donation, please contact Amy Zhou at AZhou@luriechildrens.org or at CAMP at Lurie Children's at 312.227.3300.
We'd like to thank the businesses and organizations listed below for generously contributing to our raffle.
