PVNH Support & Awareness has partnered with researchers around the globe in hopes of helping to provide improved diagnosis, care and management of neuronal heterotopia disorders, their symptoms and comorbidities to those impacted by these rare malformations of cortical development.
From time to time, we will be adding information here about new research projects we are partner in or aware of that could be open to our PVNH Support Community. Before joining a research study, please make sure to get all information upfront, ask questions, get answers and ensure you are comfortable with all aspects of the projects before providing consent.
International: PVNH Support & Awareness is partnering with McGill University Health Centre’s Dr. Kenneth Myers and team to study the PVNH phenotype in individuals affected by epilepsy. The aim is to recruit 100 participants (who speak English or French or can provide an interpreter when being interviewed) and who have a diagnosis of Periventricular Nodular Heterotopia (PVNH) and experience/have experienced seizures. This research study includes a bio/databank. Details: 2020 PVNH Epilepsy Research with MUHC. A recommended Zoom presentation of this research study will also be shared.
We have also created a PVNH Research Collaborative Network so if you are a clinician or researchers interested in joining our efforts, please reach out to us at (info)_ at_ PVNH_support_dot_com