Other ROHHAD Studies
The Center for Autonomic Medicine in Pediatrics (CAMP) at Lurie Children's is working with international group of physicians and scientists to advance research and care for ROHHAD (rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation) patients and families. Together, we are currently conducting extensive studies into the cause of ROHHAD. Identifying a cause for ROHHAD will allow improved diagnosis and a target for future treatment options. As ROHHAD is a very rare disease, participation of families around the world affected by ROHHAD is paramount to advancing this research. We need your help.
If you are interested in helping us advance ROHHAD research, you can contribute in the following ways:
We are collecting neuroimaging records for ROHHAD patients. If brain, tumor, or adenoma imaging has been previously performed in the ROHHAD patient, we ask that you provide us copies of the imaging files. This includes past and current imaging. This study will allow us to investigate possible causes of ROHHAD.
Post-Mortem Autopsy Samples
In the unfortunate even of the death of a ROHHAD patient, please consider donating post-mortem autopsy samples. We believe these samples could be integral in unraveling the cause of ROHHAD and allowing improved treatment options to be discovered.
If you are interested in any of the studies listed above or have any questions, please contact CAMP at Lurie Children’s at CAMP@luriechildrens.org or 312.227.3300. Thank you very much for considering participation in these projects.