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.
Study Phases
The following activities will take place in 2024:
- Global Survey: We will conduct a global survey with individuals with epilepsy and their families, seeking insights into their experiences, challenges, and needs. Our goal is to collect up to 500 responses from fifteen selected ‘focus countries’, which will inform the creation of a scientific publication. Additionally, responses from other countries will be welcomed and will be incorporated into a global policy advocacy report. Therefore, we strongly encourage ALL countries to seek responses from their communities to ensure we have a truly global picture of the experiences and needs of people living with epilepsy worldwide.
- In-Depth Interviews and Focus Groups: In each focus country, up to six semi-structured interviews will be arranged, along with global/regional focus groups. These qualitative research instruments will offer a more nuanced understanding of the varied needs and challenges across different segments of the epilepsy population. Based on the preliminary survey results, we will decide which populations require further exploration. For example, we may study the specific needs of women, men, young people, the elderly, minority groups, those with rare and complex epilepsies, people with epilepsy in low-income countries, etc.
Key Deliverables
- A Narrative Literature Review to map existing evidence, and evidence gaps, in understanding the unmet everyday needs of people with epilepsy, from the perspective of people with lived experience.
- A Scientific Publication on the unmet everyday needs of people with epilepsy, based on the results from our 15 focus countries.
- A Global Policy Advocacy Report mapping the unmet everyday needs of people with epilepsy worldwide containing policy recommendations linked to WHO’s 10 year Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) – to be launched on International Epilepsy Day 2025.
Expected Impact
- Augmenting existing medical data on epilepsy by incorporating insights into the social needs of individuals with epilepsy and their caregivers.
- Establishing an evidence base to guide the IBE and its global partners in addressing the priority unmet needs of individuals with epilepsy and their caregivers, thereby influencing strategic direction and work-planning for maximum impact.
- Providing country-specific data to selected IBE chapters, aiding in internal work planning and external awareness and advocacy efforts.
- Generating data for evidence-informed advocacy, driving policy creation and revisions, enhancing healthcare delivery, and informing research planning and execution.
- Establishing a clear baseline for measuring progress in implementing global policy frameworks, such as the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders.
Why Your Participation Matters
Your voice can make a difference!
By participating in the GENS survey, you contribute to a robust foundation for policymakers, researchers, and healthcare professionals to develop targeted interventions and support mechanisms tailored to the diverse needs of people with epilepsy globally.
Stay Informed
Sign up for our mailing list to be notified when the GENS survey launches globally. Be the first to know about updates, participation opportunities, and how your involvement is making an impact.
Together, we can make a difference. Your participation is the key to understanding and addressing the needs of the global epilepsy community.
Thank you for your support!
The Global Epilepsy Needs Study follows GDPR guidelines. Your personal data will be securely handled and used solely for study updates. We won’t share your information with third parties without your explicit consent. By subscribing, you agree to receive communications related to the study and its findings. You can unsubscribe at any time by following the instructions in our emails or contacting our support team.
For more information about the GENS study or any inquiries, please contact: [email protected]