PVNH Support & Awareness has partnered with researchers around the globe to help provide improved diagnosis, care and management of neuronal heterotopia disorders, their symptoms and comorbidities to those impacted by these rare malformations of cortical development. Before joining a research study, please get all information upfront, ask questions, and ensure you understand and are comfortable with all aspects of the study before providing consent.
PVNH & Epilepsy International Research Study:
PVNH Support & Awareness is partnering with Dr. Kenneth Myers and team, from the Research Institute of McGill University Health Centre, to study the PVNH phenotype in individuals affected by epilepsy. Together, we aim to recruit 100 participants who have a diagnosis of Periventricular Nodular Heterotopia (PVNH) and experience/have experienced seizures. A 30-minute phone interview is conducted by the research team with each participant/parent or guardian in English or French. Participants not fluent in either language can provide an interpreter. This research study focuses on both children and adults and is open internationally until end of May 2021. It also includes a bio/databank. The purpose of this research study is to not only develop a comprehensive picture of the phenotypic spectrum of epilepsy in PVNH, but also to identify causative gene defects. For more details and contact information, see the poster above. Should you have questions about your eligibility to participate, please contact Dr. Myers. You can view our first presentation on this research study by clicking on the following link:
***Please note the Feb. 27th, 2021 research webinar has been cancelled, due to unforeseen and our of control circumstances. We hope to have the research team give us a new date soon. ***
PVNH Support & Awareness has launched a PVNH Research Collaborative Network to pursue more research in PVNH and other neuronal heterotopia disorders. If you are a clinician or researchers interested in joining our efforts, please reach out to us at (info)_ at_ PVNH_support_dot_com