International Rohhad registry
Team leader, Dr Debra E Weese-Mayer MD
Overview
The Center for Autonomic Medicine in Pediatrics (CAMP) at Lurie Children's has collaborated with doctors from around the world to build the International ROHHAD Registry. Registries are tools researchers can use to capture important health data longitudinally (across ages and time) about certain populations. In ROHHAD, as in other rare diseases, low prevalence, lack of knowledge about the disease course, and phenotype heterogeneity hamper the development of drugs and other advances in care. The ROHHAD Registry was designed to overcome these limitations by playing a role in understanding the course of ROHHAD, and providing information necessary for clinical trial design.
How can you participate?
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. We would also ask for updated to this information on an annual basis. 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 CAMPResearch@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.
Meet the Team
The Registry was designed by an international group of investigators with unique expertise including investigators from Lurie Children’s Hospital of Chicago and Northwestern University. With support from the ROHHAD Fight Inc, we are committed to continued partnership with ROHHAD families to achieve the goals of this project, building a unique and valuable resource for ROHHAD research, not only for this study, but also for future research by the greater ROHHAD research community.