Research Priorities Following our communication requesting views on research priorities earlier last year, we have now accumulated a list on which we seek further opinion. The ILAE recognizes that priorities may differ dependent on resource and region of the world. Further there may be overlap among different communities. The purpose of us trying to address research priorities in epilepsy is that there have been examples in other specialties of joint collaborative initiatives seeking a common goal, resulting in successful funding. Taking advantage of the successful ILAE and IBE lobbying activities incremented over the last decade, our community is in a good position to seek funding for ambitious research programs at an international scale, provided a well delineated and consensual assessment of research priorities for improving healthcare in EpilepsyThe link below takes you two lists of priorities - one of questions that would require projects on a global scale to address, and a second where local initiatives could provide answers more globally applicable. Using the drop down projects please rank the priorities as you see in order of importance. This should not take too long to complete. Many thanks,Helen Cross Philippe Ryvlin Shichuo LiCo-Chairs of the Global Research Priorities and Advocacy Task ForceInstructions: Please use the attached complete explanatory text for each question to select and rank your top five for each of the two questions below, then insert your rankings in this survey. Note that each ranking number (1, 2, 3, etc) may be used only once in each question. Question Title 1. Please select and rank your top five priorities put forward that could be seen to require global collaboration[complete explanatory text] 1 2 3 4 5 6 7 8 9 10 11 12 13 Determine the phenotype variability to the epilepsies, with the objective of personalizing therapies for seizures, epilepsies and related comorbidities 1 2 3 4 5 6 7 8 9 10 11 12 13 How can we establish affordable treatments and research resources for the epilepsies? 1 2 3 4 5 6 7 8 9 10 11 12 13 Determine the incidence & prevalence of epilepsy 1 2 3 4 5 6 7 8 9 10 11 12 13 Determine the epilepsy treatment gap in different regions of the world by the study of a large multiregional cohort 1 2 3 4 5 6 7 8 9 10 11 12 13 Determine proportion of people with epilepsy that adhere to medical treatment 1 2 3 4 5 6 7 8 9 10 11 12 13 What is the psychosocial impact of epilepsy across the ages around the world? 1 2 3 4 5 6 7 8 9 10 11 12 13 What is the prevalence of co-morbidities affecting children with epilepsy; what interventions are effective across cultures? 1 2 3 4 5 6 7 8 9 10 11 12 13 Identify and understand factors leading to misconception about epilepsies to reduce daily life restriction in children and adolescent with epilepsy 1 2 3 4 5 6 7 8 9 10 11 12 13 What is the role of guidelines in different health care settings? 1 2 3 4 5 6 7 8 9 10 11 12 13 What is required to be an epilepsy center in different parts of the world inclusive of being able to deliver an epilepsy surgery service? 1 2 3 4 5 6 7 8 9 10 11 12 13 What are the barriers to global implementation of epilepsy genetics in research and patient care? 1 2 3 4 5 6 7 8 9 10 11 12 13 What is the benefit of existing interventions in the epilepsies? 1 2 3 4 5 6 7 8 9 10 11 12 13 What are the key clinical risk factors, and underlying pathophysiology to SUDEP? Question Title 2. Priorities seen as answerable on less global scale but with global applicability 1 2 3 4 5 6 7 8 9 What is the basis to epileptogenesis, comorbidities, and the role of disease-modifying treatments? 1 2 3 4 5 6 7 8 9 The identification of novel strategies and effective treatments for those with pharmacoresistant epilepsy 1 2 3 4 5 6 7 8 9 Are originator AEDs better and safer than generics? 1 2 3 4 5 6 7 8 9 What is the economic burden of epilepsy in different regions of the world? 1 2 3 4 5 6 7 8 9 What is the role of Non-pharmacological interventions? 1 2 3 4 5 6 7 8 9 What are the psychiatric outcomes of epilepsy treatment – both pharmacological and surgical, especially inclusive of people with intellectual disability? 1 2 3 4 5 6 7 8 9 What would be the potential of psychiatric work up for patients before surgery, especially showing standard minimum requirements? 1 2 3 4 5 6 7 8 9 What is the interactive relationship between epileptic and psychiatric disorders, such as depression and psychosis, also in association of surgical intervention? 1 2 3 4 5 6 7 8 9 The development of patient-specific assays through the use of inducible pluripotential stem cells Question Title 3. Do you have any additional comments? Question Title 4. Contact information (optional) Name Email Address Done
