IGAP: Asia and Oceania

EPI-ACT offers tools and examples for ILAE chapter leaders and epilepsy advocates to use while developing country-specific goals to improve Engagement, Plans, Information, Access, Care pathways, and Training and education in order to achieve the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) targets.

The ILAE has provided grants to the following Chapters from ILAE-Asia & Oceania to take action to address epilepsy treatment, inclusion, and research gaps by addressing two EPIACT elements. Funds can be used to support the project work until the end of 2027.

Bridging the Gender Gap in Epilepsy Care in Rural China

Chapter: China Association Against Epilepsy
EPIACT domains: Information and Access
Project leader: Prof. Ding Ding
Midterm progress report

This project aims to reduce disparities in treatment, inclusion and research for women with epilepsy in China’s under resourced provinces. Globally only one in five people with epilepsy receive adequate care and in rural China the treatment gap is even greater. Women in these areas face higher stigma, limited access to medication and a lack of specialist services which often leads to poor seizure control and increased premature mortality.

Over two years this project will collect data to investigate gender disparities in epilepsy care and their underlying factors. Based on the analysis we will train rural healthcare providers and educate patients to improve diagnosis and treatment adherence. We will work with local hospitals and community health workers to ensure wider availability of essential antiepileptic drugs. We will also train community advocates to promote adherence and support self management. In addition we will engage women’s associations in public awareness activities to reduce discrimination. At the same time we will gather gender disaggregated data on seizure control and mortality to guide evidence based interventions.

This project is needed in the country because China bears one of the world’s heaviest epilepsy burdens especially in rural areas. Health infrastructure shortages, financial barriers, and entrenched social stigma leave 70% patients untreated. Women in these communities face additional challenges due to gender bias and household responsibilities, which often result in poorer seizure control and higher risks of premature death. In 2022, China endorsed the WHO’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders, committing to eliminate care gaps by 2031. By focusing in rural China, this project will build on local data and established partnerships with hospitals, community health workers and women’s associations to improve medication availability and amplify women’s voices. This approach will address urgent needs and produce evidence and practices to pave the way for more equitable care across China.

Seizure Action Plans and ‘Out of hospital management’, of convulsive seizures across India: A nationwide sentinel study and implementation initiative (SEIZE-INDIA)

Chapter: Indian Epilepsy Society
EPIACT domains: Access and Care Pathways
Principal Investigator: Dr. Balveen Singh

We envisage a sentinel, nation-wide implementation initiative in the form of seizure action plans (SAPs) and rescue medication use if deemed necessary and will use mixed methods to study outcomes. The sentinel study would draw on a voluntary participation across a range of care-levels, from primary to specialist care and from public to private facilities. Outcomes assessed will include numbers of subjects using the SAPs, their seizure outcomes, feasibility, adoptability and fidelity.

The overall aim is the establish the feasibility and adoptability of an arrangement to use and operationalize customized and personalized SAPs and the appropriate use of rescue or other emergency medications in convulsive epilepsy in a real-world setting at different practice settings across India.

Primary aim: To determine the feasibility and adoptability of customized and personalized SAPs and need-based use of rescue or emergency medicines in seizure emergencies in a real-world setting at different practice settings across India.

Secondary aims:

1. To elaborate a nation-wide SAP template customized to the needs and challenges specific to the country through expert and stake-holder consensus using a participatory approach and to operationalize it using digital and mobile technology.
2. To assess the impact of SAP and need-based use of rescue or emergency medicines on success of seizure control before arrival at emergency departments.
3. To assess fidelity of the SAP and adherence thereof.
4. To inform policy-makers about the study outcomes and liaise with them regarding the possibility of a nation-wide public health programmatic initiative.

This project is needed in the country because India sustains an enormous epilepsy burden, accounting for nearly a quarter of the world’s people with epilepsy, made worse by the incredibly huge treatment and resource gaps. Although the epilepsy specialist to population ratio is better than many resource-limited countries, most specialists are concentrated in metropolitan cities, leaving the vast rural expanse deprived of specialists. This means that people with epilepsy have to travel long distances to seek routine and emergency care.

Time is of essence in the management of seizure emergencies and it becomes imperative that emergency care is provided promptly and locally in an expedient manner. Ideally, such exigency plans need to be discussed and prepared well in advance. A literature review, however, revealed only one study from India that addressed seizure action plans (SAPs) and none that studied rescue medications. Moreover, our preliminary situational assessment showed that personalized seizure action plans are rarely provided across a range of levels of service provision for epilepsy.

We aspire to bridge the SAP and rescue medications gaps in a sentinel nation-wide implementation initiative to accrue data on outcomes, with which, we will be able to approach policy-makers to consider implementation of SAPs as a priority, programmatic public health agenda. Prior to implementation, we will organize a brain-storming meeting of experts and all relevant stake-holders to devise a nationally-usable SAP template, which takes into consideration, the challenges peculiar to the country (see below). We hope to leverage digital and mobile technology in the implementation initiative.

Suwaseriya Epilepsy Rapid Response Initiative (SERRI) – Revolutinoizing Prehospital Management of Status Epilepticus in Sri Lanka

Chapter: Sri Lankan League Against Epilepsy
EPIACT domains: Training and Education, Access
Project leader: Inuka Kishara Gooneratne

The aim of this project is to reduce morbidity and mortality from status epilepticus (SE) nationwide by (i) training Suwaseriya ambulance teams to recognise SE and administer first-line benzodiazepines on-site, (ii) deploying a mobile tele-consult app linking EMTs to neurologists, and (iii) establishing a real-time epilepsy emergency database for ongoing research and quality improvement.

This project is needed in the country because Sri Lanka’s free 1990 Suwaseriya ambulance network reaches all nine provinces but currently provides only basic supportive care for seizures; no protocol or authority exists for EMTs to give anti-seizure drugs. Delays drive SE mortality and ICU burden. SERRI leverages the government-funded Suwaseriya fleet, high mobile-phone penetration and Ministry of Health support to pilot the first prehospital seizure-treatment model in South Asia, directly addressing the IGAP target to reduce SE deaths and creating a data platform transferrable to other low-resource settings.

Nationwide Epidemilogical Study of Epilepsy and Drug- Resistant Epilepsy in Thailand: Trends, Determinants, Comorbidities, and Mortality Outcomes

Chapter: Thailand Epilepsy Society
EPIACT domains: Plans, Information
Project leader: Prof. Chusak Limotai

Epilepsy and drug-resistant epilepsy (DRE) remain significant public health challenges in Thailand, with varying patterns of burden, access to care, and clinical outcomes across regions. Despite growing national awareness, comprehensive epidemiological data and insights into contributing health system factors remain limited. This study aims to provide a nationwide evidence base to inform targeted policies and improve patient outcomes.

Aim 1: To estimate the national and regional prevalence and incidence of epilepsy and drug-resistant epilepsy (DRE) across Thailand. This aim will utilize national healthcare databases and population health records to quantify disease burden, stratified by age, sex, and geographic region.

Aim 2: To investigate healthcare-related determinants of epilepsy in Thailand—both nationally and regionally—by examining the influence of public health campaigns, healthcare coverage, socioeconomic status, the COVID-19 pandemic, and major etiologies such as traffic accidents and stroke. This aim will assess how health system and societal factors contribute to the development and distribution of epilepsy using multivariate and spatial analysis.

Aim 3: To characterize the comorbidity profiles of individuals living with drug-resistant epilepsy (DRE) in Thailand. We will analyze the prevalence and patterns of physical and mental health comorbidities in DRE patients to better understand clinical complexity and care needs.

Aim 4: To evaluate all-cause and epilepsy-specific mortality among patients with DRE. Using longitudinal follow-up data, this aim will estimate mortality rates, identify causes of death, and determine clinical and sociodemographic predictors of mortality, including SUDEP and status epilepticus.

This project is needed in the country because currently, Thailand lacks up-to-date, nationwide data on the prevalence and incidence of epilepsy and DRE, as well as region-specific trends. Additionally, the impact of healthcare-related determinants—including health policy coverage, public health campaigns, socioeconomic disparities, and disruptions from the COVID-19 pandemic—on epilepsy outcomes remains poorly defined. Without this critical information, policymakers and health systems are limited in their ability to allocate resources effectively, design equitable care models, or implement targeted interventions.

This project will fill these evidence gaps by providing comprehensive national and regional estimates, identifying modifiable health system and societal factors, and characterizing comorbidity and mortality patterns in patients with DRE. The findings will directly inform public health strategies, clinical guidelines, and health equity initiatives—ensuring that people with epilepsy across Thailand receive timely, appropriate, and effective care.

The ILAE would also like to highlight the following projects from Chapters in the ILAE-Asia & Oceania region:

Epilepsy-related Patient-centered Insights from People with Epilepsy in Hong Kong: A Registry-based ANalYsis in Drug Resistant Epilepsy (EPIPHANY-DRE)

Chapter: Hong Kong Chapter of the ILAE
EPIACT domains: Plans, Information
Project leader: Dr. Maggie Lo-Yee Yau

Drug-resistant epilepsy (DRE) imposes a disproportionate burden on individuals, families, and healthcare systems, particularly and affects up to 1/3 of people with epilepsy. Despite advances in diagnostics and therapeutics, many people with DRE continue to experience uncontrolled seizures, comorbidities, and reduced quality of life. There remains a lack of structured and longitudinal data in Asia to inform precision care and health system planning for this vulnerable group.

EPIPHANY-DRE (Epilepsy-related Patient-centered Insights from People with Epilepsy in Hong Kong: A Registry-based longitudinal Analysis in Drug Resistant Epilepsy) aims to establish a prospective, patient-centered registry aligned with the global vision of the EPIACT framework. Our specific aim is to collect and integrate longitudinal clinical data, imaging, electrophysiology, patient-reported outcomes, biospecimens and surgical assessment and surgical outcomes from individuals with DRE in Hong Kong.

The project aims:

• Systematically document the clinical trajectory, social context, and patient-centered outcomes of people with DRE in real-world settings.
• Identify multimodal predictors (clinical, radiological, molecular) of disease progression and treatment response.
• Enable discovery of actionable biomarkers and genetic modifiers through integration of phenotypic and biological data.
• Identify the compliance of referral of patients with DRE for epilepsy surgery workup, and the outcomes of epilepsy surgeries.
• Build an interoperable data infrastructure that can support future interventional trials, translational research, and regional collaboration in alignment with EPIACT priorities.
• Identify the gaps in patients with DRE in receiving standard of care workup, including genetic assessment accessibility and also surgical workup options and the psychosocial impact of DRE in patient and their family.

The Iceberg Phenomenon in Epilepsy: Unveiling the True Prevalence (a population-based study)

Chapter: Indonesia League Against Epilepsy
EPIACT domains: Information, Plans
Project leader: Dr. Fitri Octaviana

This project aims to provide the very first population-based estimates of the prevalence of epilepsy in Indonesia, and shed light to the actual burden of epilepsy in Indonesia.

This project is needed in Indonesia as there has not been any population-based study of the prevalence of epilepsy in Indonesia. The availability of this data will reveal the true disease burden of epilepsy in Indonesia, which insights would be able to cause a shift in paradigm, guide the development of more effective screening and diagnostic strategies, and allow more people with epilepsy to be aware of their diagnosis in support of the ILAE & IBE 90-80-70 cascade target for epilepsy.

Through this project, we aim to contribute to broader efforts to improve access to care across the country, in alignment with the Strategic Objectives and Global Targets of the Intersectoral Global Action Plan (IGAP) on Epilepsy and Other Neurological Disorders, overcoming the treatment gap for epilepsy.

Global Epilepsy Care App: Accessible Diagnosis and Treatment for All — Bridging the Treatment Gap in Low-Resource Settings

Chapter: Japan Epilepsy Society
EPIACT domains: Access, Training and Education
Project leader: Dr. Hideo Yamanouchi

Epilepsy affects over 50 million people globally, with more than 80% living in low- and middle-income countries (LMICs). Despite being treatable, many face barriers to care due to a lack of specialists, diagnostic tools, and reliable information. This results in preventable disability, stigma, and lost economic opportunities, especially in underserved areas.

Asia and Oceania, home to 4.6 billion people (nearly 60% of the global population), are critical regions for addressing this treatment gap. In line with the Sustainable Development Goals (SDG 3: Good Health and Well-being, and SDG 10: Reduced Inequalities), scalable and accessible digital solutions are urgently needed.

This project will develop and pilot a multilingual, low-bandwidth mobile app to help frontline health workers diagnose and manage epilepsy in line with WHO IGAP and ILAE guidelines. The app will feature:

• A symptom-based seizure classification tool
• Treatment algorithms for common epilepsy types and emergencies
• Country-specific medication availability guides
• Multilingual, culturally sensitive education materials using AI translation
• Offline functionality for remote use

Pilots will be conducted in collaboration with local epilepsy societies, Ministries of Health, and frontline providers in selected LMICs, encouraging south-south collaboration.

Expected outcomes include improved epilepsy recognition and treatment, empowered non-specialist providers, reduced stigma through education, and support for WHO’s global epilepsy goals. This initiative aims to offer a scalable model for global expansion.

Education Initiative to Bridge the Status Epilepticus Treatment Gap in Malaysia

Chapter: Malaysian Society of Neurosciences
EPIACT domains: Training and Education, Information
Project leader: Dr. Chee Yong Chuan

Objectives of this project:

• Enhance Knowledge: Increase awareness of early SE recognition and updated treatment protocols among emergency personnel, DMOs and PCPs.
• Promote Practical Treatments: Educate providers on the use of non-IV benzodiazepines (IM/buccal midazolam, rectal diazepam) and on second-line ASMs (valproate, levetiracetam) in accordance with recent evidence.
• Highlight Neurodiagnostic Tools: Improve understanding of when to use EEG and how to access it (even if remote) for SE management.
• Introduce Non-pharmacological Options: Raise awareness of referral pathways for ketogenic diet and other therapies for refractory SE, even if available only at tertiary centers.
• Strengthen Care Coordination: Foster better communication between prehospital teams, district hospitals and neurology centers via clear SE treatment algorithms and referral guidelines.
• Align with ECoM/ILAE Goals: Work in collaboration with the Epilepsy Council of Malaysia to ensure content aligns with ILAE’s global training objectives and is eligible for EPI-ACT funding.

This project is needed in the country because:

1. Evidence-Practice Mismatch: Despite global guidelines (e.g., ILAE, ESETT trial) endorsing non-IV midazolam (IM/buccal) as first-line for pre-hospital SE, Malaysia’s 2023 national survey revealed severe underutilization. IM midazolam was unavailable or unused in 60–66% of district/tertiary hospitals, forcing reliance on slower IV routes. Second-line ASMs (valproate, levetiracetam) were accessible in only 50–67% of district hospitals, delaying effective treatment.
2. Critical Resource Shortages: EEG access is limited to ≈27% of district hospitals, hindering timely diagnosis of non-convulsive SE. Advanced therapies (ketogenic diet, ICU protocols) are concentrated in urban centers, leaving East Malaysia and rural areas underserved.
3. Fragmented Care Coordination: Pre-hospital teams, district hospitals, and neurologists lack standardized protocols, causing delays in escalating refractory cases. Misalignment between available resources (e.g., IM midazolam stocks) and clinician awareness exacerbates treatment gaps.

Comprehensive Epilepsy Control Program of Pakistan (CECP) - Education of Professionals & Non-Professional Stakeholders

Chapter: Epilepsy Association of Pakistan
EPIACT domains: Training and Education, Information
Project leader: Dr. Zarine Mogal

CECP is an ongoing NGO run project that has been undertaking life-changing initiatives initiative since 2001. It has two arms:

1. National Epilepsy Centre (CECP-NEC) for holistic medical management of epilepsy, education of specialists and medics of all categories and research.
2. Epilepsy Support Pakistan (CECP-ESP) for mass awareness about this treatable yet highly neglected neurological disorder due to associated myths and misconceptions. Also training of medical, allied staff and all stakeholders like school teachers, in diagnosis, management and proper referrals is done to fill the human resource gap and strengthen the work force. We seek involvement of volunteers from all walks of life in enhancing these objectives. CECP-NEC and CECP-ESP work in tandem defining the true essence of integrated holistic management of epilepsy recommended by the WHO for all chronic medical disorders. Such integrated services under one roof are rare even in the developed world. The outcome of this tandem activity has proven to be very effective. Details available here.

This project is needed in the country because epilepsy affects 1% of Pakistan’s population with 2.2-2.4 million suffering from epilepsy. Pakistan is a under-resourced country in which overall epilepsy care is poor. Inadequate medical treatment is attributed to multifaceted problems. There are only about 400 neurologists in the country, concentrated in big cities of the country. The poor treatment seeking behaviour, heightened social stigma, poverty, lack of awareness and poor health infrastructure are factors that collectively contribute to the physical, psycho-social, and economic tribulations, and marginalization of people with epilepsy (PWE). Governmental priorities and resources, both financial and human, as well as technological, are often directed towards more common infectious diseases, while epilepsy remains neglected. Help from civic society and welfare associations is usually unavailable due to a dual lack of awareness about epilepsy and the associated stigma.

NEC-CECP and CECP-ESP work in tandem to address these issues to mitigate the epilepsy related issues in the country by provide holistic management PWE, creating public awareness amongst masses, training of medical personal from all tiers better understanding and better near home management of epilepsy, CMEs for specialists thus decreasing the specialist skill gap.

Lighting the Path: Empowering Children with Epilepsy and Their Families Through Awareness

Chapter: Epilepsy Association of Sri Lanka
EPIACT domains: Engagement, Information
Project leader: Dr. Jithangi Wanigasinghe

This initiative directly supports the Intersectoral Global Action Plan (IGAP) target that 90% of people with epilepsy be aware of their diagnosis and that it is treatable. This project proposes a screen-based audiovisual epilepsy awareness intervention targeted at children with epilepsy and their families attending paediatric neurology clinics across Sri Lanka. The initiative will produce educational videos , addressing epilepsy understanding, management, and stigma reduction. Videos will be projected during clinic hours in waiting areas using 32-inch TV screens installed in all island-wid...

A structured pre- and post-intervention evaluation will be conducted among caregivers to measure knowledge gains and changes in attitudes toward epilepsy. This will provide valuable evidence to inform future strategies.

The project will involve paediatric ward nurses, who will be trained on counselling children are admitted with seizures, thereby extending the educational reach beyond clinics. Furthermore, the materials will be adapted for adult neurology care to support patients and families throughout the life course. The audiovisuals will also be used in broader public awareness activities conducted by the Epilepsy Association of Sri Lanka, including schools.

This project directly supports the Intersectoral Global Action Plan (IGAP) target that 90% of people with epilepsy be aware of their diagnosis and that it is treatable. By engaging families already within the healthcare system, the project ensures high-yield, sustained educational impact. It is a collaborative effort between the Epilepsy Association of Sri Lanka, the Sri Lanka Child Neurology Association, and the Ministry of Health, Sri Lanka, and will be completed within 12 months.