International Bureau For Epilepsy Research Articles

The origins and early development of the ILAE/IBE/WHO global campaign against epilepsy: Out of the shadows.

The International League Against Epilepsy (ILAE)/International Bureau for Epilepsy (IBE)/World Health Organization (WHO) Global Campaign Against Epilepsy was launched in Geneva and Dublin in the summer of 1997. The second phase of the Campaign was launched by a major event in Geneva, led by WHO Director General Dr. Gro Harlem Brundtland in February 2001. Since then, the Campaign has been gathering momentum around the world culminating in the WHO General Assembly Resolution (WHA 68.20) on Epilepsy in May 2015 supported by 194 countries. Recently, the World Federation of Neurology and other neurological non-governmental organizations (NGOs) have joined forces with the Epilepsy Campaign, leading to the WHO General Assembly Resolution (WHA 73.10) in May 2022 promoting a 10-year Intersectoral Global Action Plan (IGAP) for Epilepsy and Other Neurological Disorders. I was privileged to serve as the first Chairperson of the Global Campaign Against Epilepsy and this year all my documents and correspondence relating to the Campaign have been delivered to the Wellcome Collection in London. These are the basis for this detailed account of the origins and early development of the Campaign. I describe the events leading to the birth of the concept, planning for the Campaign, the launch, development, and the achievements of phase one. This first phase focused on awareness raising, education, and involvement, especially within WHO, ILAE, and IBE, including a series of five Regional Public Health meetings and Declarations on Epilepsy. In 1999, the WHO raised the status of the Campaign to the highest level, the first ever for a Non-Communicable Disease, resulting in the high profile launch of phase two in 2001, paving the way to the continuing global momentum and achievements, including the 2015 and 2022 WHO Resolutions.

“Epilepsy 90–80–70”: The Intersectoral Global Action Plan on epilepsy and other neurological disorders (2022–2031)

Epilepsy is one of the oldest known nervous system disorders and imposes enormous physical, psychological, social and economic burden on individuals, families and countries due to misunderstanding and stigmatization. These problems are most relevant for developing countries, where up to 85 % of epilepsy patients live. Despite the fact that it is a treatable and preventable disorder, there is a lack of adequate public awareness and understanding of the problems of epilepsy. This article is devoted to the Intersectoral Global Action Plan on epilepsy and other neurological disorders (IGAP) 2022–2031, adopted on 27 May 2022 at the 150th session of WHO’s Executive Board. It provides data on the public and medical importance of epilepsy, the history of the joint initiatives of WHO, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) aimed at reducing the burden of epilepsy on society and improving public knowledge about neurological disorders. The key provisions of the Intersectoral Global Action Plan on epilepsy and other neurological disorders 2022–2031 are announced. The Epilepsy 90–80–70 cascade target, launched by ILAE and IBE, is presented to inspire decades of action and significantly improve care and treatment for all people living with epilepsy worldwide. The final section is devoted to the evolution of epileptology at Almazov National Medical Research Centre, its present and its prospects.

A Review of Awareness of Pregnancy-Related Issues Among Reproductive-Aged Croatian Women with Epilepsy

Pregnancy-related epilepsy issues (PREIs) are crucial in managing women with epilepsy (WWE). The main PREIs are reduced compliance and self-discontinuation of antiseizure medications (ASMs), pharmacokinetic alterations during pregnancy, and the teratogenic potential of particular ASMs. According to a recent study, knowledge of PREIs among reproductive-aged WWE in Croatia is unsatisfactory, as are neurologist consultations about PREIs. Two hundred WWE were polled on their knowledge, sources, and needs for information about PREIs and their current ASMs usage. Prior consultation with a neurologist and increased use of books/brochures were the main predictors of knowledge. Forty-five percent of participants had a prior neurologist consultation on PREIs. Most women (61 %) chose their neurologist as their favourite future source of information, and 13 % favoured Internet. The most usually prescribed ASM was levetiracetam (34.5 %). Valproate was utilized by 26 % of respondents, among which 59 % claimed no prior PREIs consultation with a neurologist. A new campaign called Epilepsy and Pregnancy was launched by the International Bureau for Epilepsy in 2021. In February 2021, a poll of nearly 900 women was conducted across Europe as the first stage in this significant project, including 94 respondents from Croatia. Forty-two percent of Croatian WWE were given no information on pregnancy-related risks. In contrast with the aforementioned study, neurologists provided 82 percent of information about the risks of ASMs. Seventy percent reported they were not given contraception information. Providing clear, accurate and timely information on PREIs should become the norm for all neurologists caring for WWE.

ILAE clinical practice recommendations for the medical treatment of depression in adults with epilepsy.

The aim of this document is to provide evidence-based recommendations for the medical treatment of depression in adults with epilepsy. The working group consisted of members of an ad hoc Task Force of the International League Against Epilepsy (ILAE) Commission on Psychiatry, ILAE Executive and the International Bureau for Epilepsy (IBE) representatives. The development of these recommendations is based on a systematic review of studies on the treatment of depression in adults with epilepsy, and a formal adaptation process of existing guidelines and recommendations of treatment of depression outside epilepsy using the ADAPTE process. The systematic review identified 11 studies on drug treatments (788 participants, class of evidence III and IV); 13 studies on psychological treatments (998 participants, class of evidence II, III and IV); and 2 studies comparing sertraline with cognitive behavioral therapy (CBT; 155 participants, class of evidence I and IV). The ADAPTE process identified the World Federation of Societies of Biological Psychiatry guidelines for the biological treatment of unipolar depression as the starting point for the adaptation process. This document focuses on first-line drug treatment, inadequate response to first-line antidepressant treatment, and duration of such treatment and augmentation strategies within the broader context of electroconvulsive therapy, psychological, and other treatments. For mild depressive episodes, psychological interventions are first-line treatments, and where medication is used, selective serotonin reuptake inhibitors (SSRIs) are first-choice medications (Level B). SSRIs remain the first-choice medications (Level B) for moderate to severe depressive episodes; however, in patients who are partially or non-responding to first-line treatment, switching to venlafaxine appears legitimate (Level C). Antidepressant treatment should be maintained for at least 6months following remission from a first depressive episode but it should be prolonged to 9months in patients with a history of previous episodes and should continue even longer in severe depression or in cases of residual symptomatology until such symptoms have subsided.

Status epilepticus in the Canadian Arctic: A public health imperative hidden in plain sight.

ObjectiveThe World Health Organization, International League Against Epilepsy (ILAE), and International Bureau for Epilepsy have called epilepsy a public health imperative, with appropriate emphasis on low‐to‐middle‐income countries (LMIC). Although Canada is a high‐income country (HIC), income is not distributed uniformly. Furthermore, epilepsy data from the national statistical agency explicitly overlook the Arctic by excluding these territories. A common neurologic emergency, status epilepticus (SE) is a life‐threatening manifestation of epilepsy that demands prompt treatment to avoid death and long‐term sequelae. Therefore, we examined the rate of SE in a well‐defined Canadian Arctic region.MethodsThis study takes epidemiologic advantage of the Kivalliq Region's geographical isolation, which is accessible only by air. All SE patients requiring emergency care are consistently flown 1200‐1900 kilometers to a single designated hospital in a distinct southern part of Canada for further management and electroencephalography (EEG). We conducted a retrospective database and chart review at this “bottleneck” hospital to identify patients with seizure(s) severe enough to justify emergency airborne medical evacuation over a 11.25‐year period from 2009 to 2020.ResultsWe screened 40 392 EEGs to yield 117 distinct medical evacuations for “operational SE” from 99 patients to derive estimated SE incidences of 99.9 evacuations per 100 000/year and 84.5 patients per 100 000/year. The average time from seizure onset to EEG was 3.2 days. Only 16.2% of SE patients had known epilepsy. For “confirmed SE” cases meeting ILAE criteria, or cases with persistently epileptiform EEG despite days of empiric treatment, estimated incidence was 77.7 evacuations per 100 000/year and 64.9 patients per 100 000/year.SignificanceHigh SE and epilepsy rates in the Canadian Arctic are consistent with LMIC rather than HIC. Our findings demonstrate the paradox of LMIC‐equivalent epilepsy populations camouflaged within HIC. Our findings also highlight the long‐standing plight of these under‐served and overlooked populations hidden in plain sight.

The road to a World Health Organization global action plan on epilepsy and other neurological disorders.

The World Health Organization (WHO) has recognized epilepsy as a public health imperative due to its occurrence at all ages in all regions of the world, its high impact on disability-adjusted life years and psychosocial aspects, and the accompanying stigma. The International League Against Epilepsy and the International Bureau for Epilepsy have established crucial collaborations with regional and global organizations to promote epilepsy as a treatable disease, close the treatment gap in care, education, and research, and eradicate stigma. In November 2020, the efforts of these three organizations-with support from WHO member states, the World Federation of Neurology, and the European Federation of Neurological Associations-culminated in the unanimous approval of a WHO resolution to create and implement an Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. This unique achievement is built on more than 2 decades of collaboration and effort, and heralds extraordinary opportunities to work toward a world where no person's life is limited by epilepsy.

Treatments for the prevention of Sudden Unexpected Death in Epilepsy (SUDEP).

Treatments for the prevention of Sudden Unexpected Death in Epilepsy (SUDEP).

Management of Epilepsies at the Community Cottage Hospital Level in a Developing Environment.

Background:The epilepsy problem in much of Africa is characterized by stigmatization and neglect. This article describes the efforts at a cottage hospital level to ameliorate the epilepsy problem in a resource-limited environment.Methods:A seizure clinic was started in a cottage hospital after targeted health talks. The International League against Epilepsy (ILEA)/World Health Organization (WHO)/International Bureau for Epilepsy (IBE) manual was adopted for the training of staff and to guide management. Patients were followed up in the clinic and with the use of simple information communication technology.Results:Forty-five patients with ages ranging from 3 months to 42 years (who had lived with epilepsy for periods ranging from 3 weeks to 32 years) were registered over 12 months period. The most common seizure type was generalized tonic clonic (21 or 46.67%) followed by generalized clonic (8 or 17.78%). Ten (22.22%) had comorbidities mainly cerebral palsy (4 or 8.89%) and attention-deficit hyperactivity disorder (3 or 6.67%). Most (98.15%) were placed on carbamazepine. Twenty-three (51.11%) had complete control of seizures, 21 (46.67%) had reduced frequencies of attacks, and all 8 children who had dropped out of school resumed schooling.Conclusion:The epilepsy challenge in the developing world can be demystified and effectively managed at the cottage hospital level. Targeted health education, affordable management regimes, and committed follow-up are keys. A training manual based on the ILEA/WHO/IBE document should be developed for Africa.

Sleep Disorders in Epilepsy

Epilepsy is one of the most common neurological diseases and ranks 3rd among organic brain diseases. According to the consensus of the International League against epilepsy (International League Against Epilepsy, ILAE) and International Bureau for epilepsy (International Bureau for Epilepsy, IBE), epilepsy is a disease of the brain defined by any of the following conditions

Actions related to International Bureau for Epilepsy during my term as President 2013–2017

Summary The International Bureau for Epilepsy (IBE) Executive Committee for the term 2013–2017 began in June 2013 during the 30th International Epilepsy Congress in Montreal. From the beginning, our primary goals were to fulfil the mission of our organisation and address problems such as awareness, education, and social issues, while promoting and protecting the human rights of persons with epilepsy (PWE) and improving trans-regional equity in access to health care services, improved prevention, diagnosis and treatment and as a consequence, a reduction in the treatment gap and alleviation of stigma worldwide. By so doing, the quality of life of PWE and those who care of them will be significantly improved. In order to achieve these aims, the IBE joined forces with the International League Against Epilepsy (ILAE) and also the World Health Organisation (WHO), regional and national IBE organisations and other stakeholders. In addition, the participation of the IBE President in many national epilepsy events worldwide has helped to promote care and human rights of PWE nationally. A major awareness event accomplished during our term in office was the launch of the International Epilepsy Day in 2015. An IBE-ILAE event celebrated the 2nd Monday in February each year at the European Parliament with the participation of many stakeholders, PWE and advocates for epilepsy MEPs. In 2014 in order to improve access to care, treatment, appropriate treatment for PWE worldwide, particularly in developing countries, we developed our strategy plan becoming IBE’s roadmap up to 2019 and with strategic priorities to establish epilepsy as a health priority worldwide. In June 2014, in Troina, Italy, WHO, ILAE, IBE and the Global Outreach Research Task Force organised a workshop to discuss how to improve access to antiepileptic medicines in low- and middle-income countries and, as a consequence, to produce a white paper. A unique historical achievement during our term in office was the approval from WHO and subsequently from World Health Assembly (WHA) (May 26th, 2015) the Resolution on the Burden of epilepsy, and calls on United Nation Member States to implement the WHA68.20 actions and for WHO to report back in 2018. The creation by IBE/ILAE in 2016 the legal entity Epilepsy Alliance Europe has given the opportunity for both organizations to play a partnership role in many research projects aiming to reduce the epilepsy burden in Europe and worldwide.

Treatments for the prevention of Sudden Unexpected Death in Epilepsy (SUDEP).

Treatments for the prevention of Sudden Unexpected Death in Epilepsy (SUDEP).

From global campaign to global commitment: The World Health Assembly's Resolution on epilepsy.

Tuesday May 26, 2015, will be remembered as an historic day in the fight against epilepsy. On that date, the World Health Assembly approved unanimously the Resolution on the "Global Burden of Epilepsy and the Need for Coordinated Action at the Country Level to Address its Health, Social and Public Knowledge Implications," which urges Member States to implement a coordinated action against epilepsy and its consequences. This event, which comes almost 20 years after the establishment of the Global Campaign against Epilepsy, is another landmark in the longstanding collaboration among the World Health Organization (WHO), the International League Against Epilepsy (ILAE), and the International Bureau for Epilepsy (IBE) in addressing the needs of people with epilepsy. It also acted as a catalyst for other professional societies, including the World Federation of Neurology (WFN), to join forces in promoting a common action against epilepsy. The Resolution did not happen by chance, but came at the end of a long journey that involved the hard and tireless work of many dedicated individuals around the globe.

My epilepsy story: What is it like to be absent?-A message from an "ex"-patient.

My epilepsy story: What is it like to be absent?-A message from an "ex"-patient.

Commentary: international epilepsy day.

The Commission on European Affairs of the International League Against Epilepsy (ILAE-CEA) read with great pleasure the letter by Dr. MA Aleem, concerning a world day for epilepsy, which was published in Epilepsia. We agree that an international day for epilepsy would contribute significantly to overcome the problems caused by misconceptions and myths about epilepsy. The ILAE-CEA together with the International Bureau for Epilepsy (IBE) has successfully organized the European Epilepsy Day since 2011. These events proved to be extremely helpful in attracting the attention of the society and of the political decision makers to epilepsy. We are convinced that an international day for epilepsy would be even more efficient in doing this; therefore, the ILAE-CEA fully supports this initiative. CEA is also in favor of merging the regional and the International Epilepsy Days. Celebrating one and the same day all over the world is likely to be more effective than to split the attention into different days. However, regional and national activities should continue to play important roles in the International Epilepsy Day. It is difficult to find the best timing for an International Epilepsy Day, as one has to take into account various competing events worldwide. The IBE and ILAE executive committees suggested the second Monday in February. The CEA supports this date. Fortunately it coincides with the European Epilepsy Day, facilitating the merging between the regional European and the international events. We suggest naming the event International Epilepsy Day. Best wishes I have no conflicts of interest to disclose. I confirm that I have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. Sándor Beniczky is liaison for communication, ILAE-CEA.

Commentary: international epilepsy day.

Commentary: international epilepsy day.

A White Paper on the medical and social needs of people with epilepsy and intellectual disability: the Task Force on Intellectual Disabilities and Epilepsy of the International League Against Epilepsy.

This White Paper builds on the publication of the International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE) report "Listening for a change-medical and social needs of people with intellectual disability who have epilepsy" (Listening for a change the medical and social needs of people with epilepsy and intellectual disability, ILAE, 2013). The Paper presents an overview of the recommendations of the report, which aim to improve the health and social care of this important population of people with epilepsy worldwide. Actions in four domains are indicated: (1) the development of standards and initiatives that would enhance diagnosis, pathways to investigation, and treatment; (2) the development of guidelines for treatment, specifically best practice in the management of antiepileptic drugs including rescue medication; (3) the development of standards for primary care, multidisciplinary teamwork, and clinical consultations, with emphasis on the need to enhance communication and improve access to information; and (4) the enhancement of links among different stakeholders including medical services, educational establishments, employment services, organizations providing opportunities for social engagement, and family members. The breadth of needs of this population is a challenge to the epilepsy world, spanning all the professional groupings, care providers, and the research modalities in epilepsy.

An interview with: Jorge J. Rodriguez, MD, PhD; Unit Chief, Mental Health and Substance Use; Pan American Health Organization.

An interview with: Jorge J. Rodriguez, MD, PhD; Unit Chief, Mental Health and Substance Use; Pan American Health Organization.

In Memoriam: Harry Meinardi (February 20, 1932-December 20, 2013)

In Memoriam: Harry Meinardi (February 20, 1932-December 20, 2013)

Current position of phenobarbital in epilepsy and its future

This article reviews the current position of phenobarbital using articles published since 2000 and speculates on its likely future contribution to epilepsy care. Over the last decade there have been no major double-blind randomized placebo-controlled or comparative trials with phenobarbital. Previous studies have suggested that phenobarbital is as effective in monotherapy as phenytoin and carbamazepine. Several observational studies undertaken in developing countries over the last decade have confirmed its efficacy and safety for the common epilepsies. This was particularly so in the substantial demonstration project undertaken in rural China under the auspices of the World Health Organization in partnership with the International League Against Epilepsy and International Bureau for Epilepsy. Phenobarbital is still widely used for neonatal and childhood seizures and for drug-resistant convulsive and nonconvulsive status epilepticus. Recent data have confirmed in a prospective cohort of women taking phenobarbital as monotherapy that the drug can be associated with a range of congenital defects in exposed infants. Much effort has gone into exploring the apparent contradiction of higher withdrawal rates due to cognitive and behavioral side effects in studies undertaken in developed countries but not in those sited in the developing world. A raft of data over the last 10 years, including a systematic review, showed no important differences between the tolerability of phenobarbital compared to that with other antiepileptic drugs. Finally, cognitive test scores and mood ratings in 136 people with epilepsy receiving phenobarbital for a year were similar to those in 137 age-, sex-, and education-matched controls in a number of Chinese villages. Indeed, there were some cognitive gains in the patients possibly due to improved seizure control. Phenobarbital is still the most cost-effective pharmacologic treatment for epilepsy. All these data predict a healthy future for phenobarbital, particularly in helping to close the treatment gap in low- and middle-income countries during its second century of clinical use.

Evidence-based guidelines for mental, neurological, and substance use disorders in low- and middle-income countries: summary of WHO recommendations.

Funding for the mhGAP Programme, under which the work reported in this manuscript was done, was provided by the following: American Psychiatric Foundation, USA; Association of Aichi Psychiatric Hospitals, Japan; Autism Speaks, USA; CBM; Government of Italy; Government of Japan; Government of The Netherlands; International Bureau for Epilepsy; International League Against Epilepsy; Medical Research Council, UK; National Institute of Mental Health, USA; Public Health Agency of Canada, Canada; Rockefeller Foundation, USA; Shirley Foundation, UK; Syngenta, Switzerland; United Nations Population Fund;World Psychiatric Association