Full TitlePrognosis, Treatment, and Mechanisms in an International Pediatric-Onset Opsoclonus Myoclonus Ataxia Syndrome (POOMAS) Database and Virtual Biobank
The purpose of this study is to establish a registry of patients with a rare disease called pediatric-onset opsoclonus myoclonus ataxia syndrome (POOMAS). POOMAS affects the brain, spinal cord, and other nerves. Its exact cause is unknown, though a small number of patients with neuroblastoma may have this condition.
Researchers are creating this patient registry to learn more about POOMAS. A patient registry is a collection of health information from many different people with one disease or condition. This registry will help researchers learn more about how POOMAS affects children and young adults and how patients respond to treatment.
In this study, researchers will collect information about the medical care that patients receive to treat POOMAS. They may also collect and study samples of blood, tissue, or cerebrospinal fluid that were collected during standard tests. (Cerebrospinal fluid is a clear, watery liquid that cushions and protects the brain and spinal cord.) This study will not provide any form of treatment for POOMAS or any other condition.
This study will include patients with opsoclonus myoclonus ataxia syndrome that began when they were under age 18.
For more information about the registry, please call Dr. Yasmin Khakoo at 212-639-8292.