Here are a list of different research studies around the world.
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. This research study includes a biobank. Details: 2020 PVNH Epilepsy Research with MUHC
In USA, you can contact Walsh Lab’s PVNH Study and/or the Epilepsy Phenome / Genome Project
In Germany, contact PD Dr. med. Ute Hehr, Zentrum für Humangenetik
am Universitätsklinikum and PD Dr. med. Burkhard Kasper
Epilepsiezentrum Erlangen – Neurologische Klinik
In the UK, contact the Oxford Brain Abnormalities Research Group