Important MWS Research Seeks Volunteers
Children’s National Research on ESES in MWS and its Impact on Development
The purpose of the research is to collect electroencephalogram (EEG) recordings, developmental assessments and information such as seizure history, treatment, imaging, and medical records from people with genetically-confirmed Mowat Wilson syndrome (MWS). We hope to gain a better understanding of the occurrence of electrical status epilepticus during slow wave sleep (ESES) in MWS and its impact on development. John M. Schreiber, M.D. is the Principal Investigator.
Your child may qualify if:
They have genetically confirmed MWS and at least one previous EEG capturing sleep.
What to expect
As part of this research study, we will collect medical records and diagnostic tests already performed including genetic testing results, brain imaging and EEG. We will also assess development using the Vineland Adaptive Behavior Scales and other scales to assess developmental milestones. All these procedures will happen remotely over a telehealth/ telephone visit or visits that will take about 1-1/2 to 2 hours to complete, in total.Compensation:You will not be paid to participate in this study
Compensation
You will not be paid to participate in this study.
Contact Information
If you are interested in participating, please contact Taylor Haughton at thaughton@childrensnational.org or 202-476-5680.
Download the Press Release
