The Global Epilepsy Needs Survey is now closed.

New Preprint Available: The Global Epilepsy Needs Study (GENS): A mixed-methods, multi-country exploration of the unmet psychosocial and everyday needs of people with epilepsy

We are pleased to announce that a preprint of our GENS manuscript is now available online.

You can read the full preprint here.

The International Bureau for Epilepsy (IBE) is pleased to announce the launch of the Global Epilepsy Needs Study (GENS) – a groundbreaking initiative co-designed by individuals with lived experience of epilepsy and backed by a multi-stakeholder expert advisory group.

GENS signifies a major step forward towards understanding the most burdensome unmet needs of the epilepsy community, aligning with IBE’s vision for achieving a transformational social change for people with epilepsy worldwide.

Why GENS Matters

Epilepsy affects over 50 million people globally, yet significant gaps remain in understanding its full impact on individuals and communities. GENS seeks to bridge this gap by collecting comprehensive data and firsthand insights directly from those affected by epilepsy. This understanding is essential for driving meaningful change in global policy, research, and healthcare programmes.

The Different Parts of This Study

This study includes different research activities:

    1. A global survey where we will ask people with epilepsy and their caregivers about different parts of their life (for example, quality of life and ability to achieve life goals, education and/or employment, safety, healthcare and wellbeing etc.). 
    2. Interviews: In 15 countries (mentioned above), we will also be interviewing up to six people from different backgrounds and with different experiences of epilepsy to explore and understand their experiences more deeply. 
    3. Focus Groups: Towards the end of the study, we will also hold some focus groups with groups of people who live with epilepsy. This will help us learn about the experiences of specific groups that share similarities. For example, caregivers of people with rare/complex epilepsy or perhaps women with epilepsy, men with epilepsy, or young people, the elderly, people in low/middle income settings or minority groups.

Together these different research activities will give us a global understanding of unmet needs of people with epilepsy, across all aspects of life.

We’re working with 15 different countries to deliver this study! Here’s Who…

Canada, USA, Argentina, Brazil, Bosnia & Herzegovina, Croatia, Denmark, Spain, Tunisia, The Gambia, Uganda, India, China and Hong Kong SAR, Korea and Australia!

Nineteen national epilepsy support groups across these countries are working with us to deliver this study on the ground.  

As it’s a very big study, we’ll be launching the survey in three phases across the world.

Phase Country 
Phase 1 
  • USA
  • Argentina
  • Tunisia
  • China
  • Australia
Phase 2
  • Bosnia & Herzegovina
  • Brazil
  • Croatia
  • India
  • Republic of Korea (South)
Phase 3
  • Spain
  • Canada
  • Denmark
  • Hong Kong
  • Uganda
  • The Gambia
Phase 4 Global – all other countries invited to participate

At the end of this global study we will:

  1. Write a scientific publication communicating the true, unmet everyday needs of people with epilepsy, based on the results from our 15 focus countries.
  2. Produce an IBE Global Policy Advocacy Report which outlines the results from ALL countries (not just the 15 focus countries). This report will map the unmet everyday needs of people with epilepsy worldwide. It will also include policy recommendations linked to WHO’s 10 year Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP). 

These two resources will be shared with national epilepsy support groups around the world, with epilepsy healthcare professionals and researchers to help shape information & support programmes.

Expected Impact 

  1. Build on the existing knowledge and research that has focused on medical needs, providing a more comprehensive picture of the true needs of individuals with epilepsy and their caregivers.
  2. Use this evidence to guide the IBE and the global community, ensuring a strategic direction and delivery plan to maximise impact, as well as establish a baseline for measuring progress in implementing global policy efforts.
  3. Providing country-specific data to IBE chapters that can be used as an evidence-base to advocate at a national level.

Why Your Participation Matters

Your voice can make a difference! Your own unique experiences and needs will tell us what the biggest unmet needs are in your country!

You will also contribute to a groundbreaking global study to ensure progress and improvement in the lives of people with epilepsy and their families.

Your answers will tell us about what solutions might work best where you and your family are.