International Child Neurology Association Research Articles

Access to Pediatric Neurology Training and Services Worldwide: A Survey by the International Child Neurology Association.

Access to Pediatric Neurology Training and Services Worldwide: A Survey by the International Child Neurology Association.

Access to Pediatric Neurology training and services worldwide: A survey by the International Child Neurology Association.

Pediatric neurology is the medical subspecialty responsible for diagnosing and managing diseases and disorders of the nervous system in childhood and adolescence. In many, but not all, regions of the world the discipline of pediatric neurology is recognized as a specialty or subspecialty of either Neurology or Pediatrics. Significant knowledge and competencies in this area are necessary to be effective in clinical practice. The need for this is driven by the high burden of disease from neurological conditions in children and the impact on their families.As the first part of a multi-staged project under the auspices of the International Child Neurology Association, in collaboration with key stakeholders, a survey was undertaken to establish which countries have practicing child neurologists. For those countries that have child neurologists, the survey established the number of practitioners, and which countries have access to in-country child neurology training.Responses were obtained from 177 countries. Worldwide there is a median of 0.07 and mean of 0.39 child neurologists per 100 000 population. The greatest deficits in child neurology specialists and access to training were evident in countries which fell under the world bank rating of low income country status (range of 0 to 0.008 child neurologists per 100 000 population). Seventy-three percent of low income countries lack access to child neurologists: the majority are in the African and South-East Asia Regions. For the population of 1.37 billion in the continent of Africa there were 324 child neurologists, equating to median 0.01 per 100 000 population in comparison to a median of 0.59 child neurologists per 100 000 across high income countries. Ninety-four countries had capacity to support in-country pediatric neurology training.Worldwide there are inadequate numbers of child neurologists and great need for increased training capacity.

Care Delivery for Children With Epilepsy During the COVID-19 Pandemic: An International Survey of Clinicians.

Objective:To evaluate the effect of the COVID-19 pandemic on global access to care and practice patterns for children with epilepsy.Methods:We conducted a cross-sectional, online survey of pediatric neurologists across the world affiliated with the International Child Neurology Association, the Chinese Child Neurology Society, the Child Neurology Society, and the Pediatric Epilepsy Research Consortium. Results were analyzed in relation to regional burden of COVID-19 disease.Results:From April 10 to 24, 2020, a sample of 212 respondents from 49 countries indicated that the COVID-19 pandemic has dramatically changed many aspects of pediatric epilepsy care, with 91.5% reporting changes to outpatient care, 90.6% with reduced access to electroencephalography (EEG), 37.4% with altered management of infantile spasms, 92.3% with restrictions in ketogenic diet initiation, 93.4% with closed or severely limited epilepsy monitoring units, and 91.3% with canceled or limited epilepsy surgery. Telehealth use had increased, with 24.7% seeing patients exclusively via telehealth. Changes in practice were related both to COVID-19 burden and location.Conclusions:In response to COVID-19, pediatric epilepsy programs have implemented crisis standards of care that include increased telemedicine, decreased EEG use, changes in treatments of infantile spasms, and cessation of epilepsy surgery. The long-term impact of these abrupt changes merit careful study.

Editorial

Editorial

Tribute to Linda Joanna DE MEIRLEIR

Tribute to Linda Joanna DE MEIRLEIR

JICNA in 2018

2018 is the fourth year of the Journal of the International Child Neurology Association (JICNA), and continues to publish papers which are open access, without publication fees. JICNA was set up to: i) promote child neurology throughout the world, in particular encourage papers from low and middle income countries; ii) provide peer review scientifically sound papers on child neurology; iii) provide open access, so that papers can be accessed from anywhere free of charge in the world. In order to achieve these goals we ask members of ICNA contribute to making this a rigorous and vibrant journal, by submitting papers (particularly research papers), reviewing papers in a timely manner and if they have the time and energy put themselves forward as a section editor.
 There remain significant challenges in reviewing papers in timely manner and soliciting research based papers. Some reviewers are excellent, reviewing the papers quickly and thoroughly. In particular we would like to commend Professors Lieven Lagae and Jo Wilmshurst, who have reviewed more than four papers in a timely manner. We would also like to thank the following people who have reviewed papers since the start of the journal: Amina Abubakar, Banu Anlar, Harry Chugani, Paolo Curatolo, Russell Dale, Marilisa Guerreiro, Samson Gwer, Richard Idro, Symon Kariuki, Manju Kurian, Ming Lim, Lokesh Lingappa, Andrew Lux, Linda de Meirleir, Lakshmi Nagarajan, Robert Ouvrier, Raili Riikonen, Arushi Saini, Michael Shevell, Pratibha Singhi, Takao Takahashi, Ingrid Tein, Ruth Williams.
 We are still looking for section editors for the journal, who show commitment to the journal. We have suggested the following criteria: i) contribute at least two papers (one research and one review); ii) review at least two papers within 2 weeks; iii) be prepared to help people from low resource areas to analyse and write up their research; and iv) have acknowledged expertise in the area of section (reference from another person in the field). This does represent considerable commitment in terms of time and energy. Please contact us if you would like to be and can commit to be a section editor.
 Papers in JICNA can be accessed through the JICNA web site, and through CrossRef, Google Scholar and are distributed under the terms of the Creative Commons Attribution License. In 2018 we hope that JICNA will be recognised by other free search engines.

Isabelle Rapin (1927–2017)

Isabelle Rapin (1927–2017)

Isabelle Rapin, MD (1927–2017)

On May 24, 2017, academic neurology lost one of its legendary pioneers who shattered our preconceptions of developmental disorders and created entirely new paradigms of thought, realms of nosology, pathogenic mechanisms, and interdisciplinary studies. Isabelle Rapin, MD, professor emerita in the Saul R. Korey Department of Neurology and the Department of Pediatrics, died after a bout with pneumonia. She was 89. A lifelong faculty member at Einstein and founding member of both the Child Neurology Society and the International Child Neurology Association, Rapin's many accomplishments in the scientific realm reflected her lifelong passion for science and singular dedication to alleviating the suffering of patients and families often stigmatized by disorders of unknown provenance and unusual behaviors. An inspirational leader who shunned the limelight, she was often referred to as “a luminary in her field” and “always the guiding light.” Rapin was performing “translational research” before the term was introduced, authoring more than 250 unique scholarly contributions in numerous areas, including genetic metabolic diseases/lysosomal storage disorders and DNA repair disorders. However, her passion was language and hearing and other communication disorders, particularly autism spectrum disorders, which she viewed as “syndrome complexes.” To accomplish her goals, she enlisted the aid of talented and visionary otolaryngologists, neuropsychologists, and developmental psycholinguists among many nontraditional collaborators. Her last article was a brilliant treatise on dyscalculia,1 a subject avoided by many but beautifully explained by her incisive writing and clarity of thought.

JICNA in its Second year

The year 2017 represents the third year of the Journal of International Child Neurology Association (JICNA). In 2015 we assessed 9 papers and accepted 6 papers for publication. In 2016, we assessed 8 papers and accepted 7 papers for publication. To date we published 7 research papers, 5 review papers and 2 case reports. There have been considerable challenges in setting up a journal. These challenges include identifying reviewers who produce timely reviews, persuading people to submit research based papers, copy editing and issues with the software. We have sorted out the latter two issues. Papers are sent out to at least two reviewers, often one reviewer produces a time review, but chasing the other review is often time consuming, and review and thus publication. We would really encourage members of International Child Neurology Association (ICNA) to let us know if they would be willing to review papers in a timely manner and on what subjects they would be willing to review papers. We would like to invite members of ICNA to consider becoming section editors for the journal. This does involve a commitment, and we have suggested the following criteria:contribute at least two papers (one research and one review);review at least two papers within 2 weeks;be prepared to help people from low resource areas to analyse and write up their research;and have acknowledged expertise in the area of section (reference from another person in the field). This does represent considerable commitment in terms of time and energy. Please contact us if you would like to be and can commit to be a section editor.The JICNA is the journal of ICNA, and was set up with the following aims: i) to promote child neurology throughout the world, in particular encourage papers from low and middle income countries, who find it difficult to have their papers accepted by the more established journals; ii) to provide peer review scientifically sound papers on child neurology; iii) to be open access, so that papers can be accessed from anywhere in the world; iv) to be free as long as feasible, so to encourage papers from low and middle income countries. In order to achieve these goals it is important that members of ICNA contribute to making this a rigorous and vibrant journal. We encourage all members to contribute to this journal, by submitting papers (particularly research papers), reviewing papers in a timely manner and if they have the time and energy put themselves forward as a section editor.

Autism Spectrum Disorders in Africa: Current Challenges in Identification, Assessment, and Treatment: A Report on the International Child Neurology Association Meeting on ASD in Africa, Ghana, April 3-5, 2014.

Prevalence of autism spectrum disorders has increased over recent years, however, little is known about the identification and management of autism spectrum disorder in Africa. This report summarizes a workshop on autism spectrum disorder in Africa under the auspices of the International Child Neurology Association and the African Child Neurology Association through guided presentations and working group reports, focusing on identification, diagnosis, management, and community support. A total of 47 delegates participated from 14 African countries. Although there was a huge variability in services across the countries represented, numbers of specialists assessing and managing autism spectrum disorder was small relative to populations served. Strategies were proposed to improve identification, diagnosis, management and support delivery for individuals with autism spectrum disorder across Africa in these culturally diverse, low-resource settings. Emphasis on raising public awareness through community engagement and improving access to information and training in autism spectrum disorder. Special considerations for the cultural, linguistic, and socioeconomic factors within Africa are discussed.

Launching the Journal of International Child Neurology Association (JICNA)

The International Child Neurology Association has started a peer-reviewed child neurology journal, the Journal of International Child Neurology Association (JICNA). The Journal website at http://jicna.org is up and running, and journal has already been receiving submissions. We would like to thank the brave authors who have submitted their initial papers to JICNA. The papers will be deposited on the web, and is currently indexed in CrossRef, Google Scholar and Directory of Open Access Journals (DOAJ).All manuscripts submitted to JICNA will undergo full peer review and fast publication. JICNA implements a continuous publication workflow, from 2013 where full citation details are provided for all published articles from the first date of publications whilst maintaining the archives in a number of issues per volume. Under the current licence scholars, scientists, government officials, and the general public can view, download, print and redistribute any article without a subscription. At present JICNA does not charge any article processing and publication fees.In addition the content in JICNA will also be integrated into ICNApedia (http://icnapedia.org) the Child Neurology Knowledge Environment published by the International Child Neurology Association (ICNA). This would allow readers to access the interesting and useful material on this platform. We aim to get the Journal indexed in Medline within the year and also deposit in other repositories including PubMed Central. In addition there are robust arrangements in place to ensure permanent preservation of, and access to, all content published. But to achieve these goals, the journal needs to be in existence for more than a year and published at least thirty peer-reviewed papers.JICNA will only flourish if it receives papers to publish, and is read and referenced by child neurologists all over the world. We have started and now we look to the ICNA membership to contribute to this journal, and be involved in a new and exciting publication in child neurology helping to disseminate current research as widely as possible. Please start submitting your papers to JICNA via the website: http://jicna.org/index.php/journal/about/submissions#onlineSubmissionsYou will need to register as an author, and follow the author guidelines for submission. If you having any difficulties please contact either of us directly. We look forward to receiving your manuscripts.

My 30‐year roadmap for pediatric myasthenia gravis in Hong Kong: Searching for international collaboration

AbstractPediatric myasthenia gravis (P‐MG) is an autoimmune disease affecting the neuromuscular junction (NMJ), and is rare in children. The roadmap of the research carried out for P‐MG in Hong Kong over the past 30 years was reviewed. Currently, there is a lack of epidemiological studies in comparing clinical data or the outcome for people of different ethnic origins. P‐MG is more common in Asians, especially Chinese and Japanese. Because of the lack of comparison studies for P‐MG worldwide, the author initiated collaboration with international colleagues in 2008, and set up “The International Paediatric Myasthenia Gravis Registry Focus Group (FG)” in 2009. We then established an “International Pediatric Myasthenia Gravis Registry (IPMGR)” to review the current knowledge of P‐MG in children. We designed an e‐MG questionnaire for “Myasthenia Syndromes in Children,” and launched through the website (ICNAPaedia) of the International Child Neurology Association (ICNA) in 2009–2010. As of 2014, we had collected 121 replies from clinicians–researchers in 43 countries. In 2013, we started a Delphi process for obtaining a consensus for diagnosis, management and treatment of P‐MG. Despite the lack of research funding support as a result of the rarity of P‐MG, and the lack of innovative pharmaceutical research and development, we still stress that we set up a foundation as a small step towards consolidating international collaboration to carry out epidemiological studies, genetic studies and randomized controlled trials of all the current available treatments, especially steroids for ocular P‐MG, and indications for thymectomy.

Foreword

The Journal of the International Child Neurology Association (JICNA) is delighted to publish the proceedings of the 13th Congress of the International Child Neurology Association. The 500+ abstracts reflect the wide ranging research and practice in the field of child neurology, worldwide. While they are very informative and reflective of current trends in child neurology, readers should bear in mind that the abstracts may not have been fully peer reviewed. I look forward to receiving the full papers from this data to be considered for publication in JICNA.Charles NewtonEditor-in-ChiefJICNA

Neurovascular disorders in children: a 21st century challenge for paediatric neurologists

Neurovascular disorders have been poorly understood within paediatric neurology and perceived as rare and untreatable. However, clinical and research advances argue for the development of this neurological subspecialty. Key examples are better understanding of risk factors for childhood stroke, recognition of cerebrovascular complications of genetic disorders, and the potential for multimodal therapy for complex cerebrovascular disease. Arterial ischaemic stroke (AIS) in adults is now a medical emergency; however, the distinct causes and consequences in children make adult ‘stroke pathways’ (e.g. for hyperacute thrombolysis) inappropriate for most children. The significant delays in diagnosis of childhood AIS reflect lack of clinical awareness and access to acute neuroimaging – the latter is essential because of the wide differential diagnosis. Management of childhood stroke is supported by international clinical guidelines,1 but these also reflect the urgent need for high quality research to underpin recommendations, currently based on expert consensus. Specialist clinical expertise can help to target investigations and potential interventions in individual children, as these are much more diverse than in adults. The International Pediatric Stroke Study group (https://app3.ccb.sickkids.ca/cstrokestudy/) has provided key insights into childhood stroke and developed an important collaborative research framework. International networks, such as the International Child Neurology Association (ICNA; http://www.icnapedia.org), have an important role in facilitating clinical and research infrastructure, as well as the resources to consider global variations in disease profiles and medical practice. Sickle-cell disease is one of the most common severe monogenic disorders; a quarter of affected people will have ischaemic brain injury in childhood. Transcranial Doppler ultrasound (TCD) screening, and prophylactic blood transfusion if this is abnormal, is effective in AIS prevention2 and is being implemented in many countries. The UK National Institute for Health and Clinical Excellence (NICE) guidelines (http://sct.screening.nhs.uk/cms.php?folder=2493) recommend neuroimaging in children with abnormal TCD studies, as well as those with a range of neurological symptoms. Interpretation of neuroimaging in sickle-cell disease and putting this into an appropriate clinical context is complex, and argues for involvement of a child neurologist. Other neurological issues include assessment for surgical revascularization, concurrent cerebrovascular pathologies (including dissection3), and AIS risk factors. The issue of cerebrovascular screening in asymptomatic children with genetic disorders is complex and contentious. Examples include children whose parents have hereditary haemorrhagic telangiectasia4 (frequency 1:5 000) and microcephalic osteodysplastic primordial dwarfism type II – even where there are guidelines, the evidence underpinning these is scanty. The ethical and health economic issues merit separate consideration; however counselling, imaging, and managing such patients and their cerebrovascular disease is complex, requiring specialist expertise and access to a multidisciplinary neurovascular team. The literature on treatment of paediatric brain arteriovenous malformations is strongly biased by proponents of specific treatment approaches (surgical resection/endovascular treatment/stereotactic radiosurgery) and it is impossible to derive conclusions about relative efficacy or factors influencing this. Increasing realization that vascular malformations are commonly genetic or systemic means that a detailed clinical assessment and identification of medically treatable factors is essential. In this regard the neurologist can act as an honest broker in the multidisciplinary forum. Excitingly, genetic advances have elucidated some underlying disease mechanisms and targeted medical interventions are likely to become available in the palpable future.5 Rapid developments in endovascular devices (stents/angioplasty) mean that the neurologist within such teams also has a key role in identifying children with occlusive cerebrovascular diseases who could benefit from these novel interventions, akin to established practice for evaluating children with moyamoya for surgical revascularization. Organizations such as ICNA, are key to achieving improvements in clinical care and facilitating research on paediatric neurovascular disorders on a global scale. In the upcoming May 2012 ICNA meeting in Brisbane (http://www.icnc2012.com) there will be four neurovascular sessions, including 11 lectures from an international faculty, promoting both clinical and research agendas. Paediatric neurovascular disorders are clinically significant and now often treatable. The development of networks, that include specialist multidisciplinary teams to consider complex or novel interventions and systematically accrue high quality clinical evidence is an essential requirement.

The International League Against Epilepsy at the threshold of its second century: Year 2

In July 2009, the International League against Epilepsy (ILAE) developed its four-year strategic plan. This is the second year progress report, prepared by the management committee and the chair of the Strategic Task Force, with input from several key leaders, to highlight progress toward achieving the plan’s goals. Additional information regarding our activities can be found at our renovated website (www.ilae-epilepsy.org).

The role of ICNA in Africa

The role of ICNA in Africa

Education in Child Neurology: The Role of the International Child Neurology Association (ICNA)

Recent progress in pediatric neurosciences has greatly increased the divide between the possibilities for diagnosis and intervention among developed countries and resource-poor countries, where child neurologists suffer from the lack of adequate training, the absence of a network with professionals around the world, and the shortage of infrastructure. The International Child Neurology Association (ICNA) is the only child neurology association that can deal with these important issues and promote the reduction of this gap. In this article, the author reviews the role played by ICNA in the past 2 decades in supporting education worldwide, in offering teaching seminars and visits by senior members, and in addressing the needs of the global community of child neurologists. The challenges and success of ICNA in the promotion of educational resources and recommendations for the future are discussed.

Child neurology in resource‐poor countries – the role of International Child Neurology Association

The International Child Neurology Association (ICNA) was founded in 1973 to improve the care of children with neurological disorders worldwide, promote training in child neurology, and support research and international cooperation. It is estimated that 70% of children with disabilities live in resource-poor countries1 and most of these children have neurological impairments. The prevalence of common neurological conditions such as epilepsy is higher in resource-poor countries than the West.2 Furthermore, the burden of acute neurological conditions such as seizures in these countries is also considerably higher than in the West. For example, neurological features occur in 20% of children admitted to a Kenyan district general hospital.3 Yet despite this significant burden, there are few personnel or facilities available for the management of neurological conditions in these parts of the world. There is a considerable lack of medical personnel in many resource-poor countries. For example, there are less than 10 doctors per 100 000 people in many African countries, compared with 230/100 000 in the UK.4 There are few doctors with any neurological training. Thus, in many countries in Africa, there are no child neurologists. In those countries that have child neurologists, these doctors have not been able to obtain proper training, but often rely on a 6-month period in a Western centre on which they are expected to base their clinical expertise. These periods often provide experience that is not relevant to their home countries. Furthermore, these attachments have become even more problematic in Europe with the restrictions on employment of doctors from outside this region. But many doctors and other health care personnel without specialist training are interested in child neurology, and are keen to learn more, improve their expertize, and set up services for children with neurological conditions and neurodisabilities. So what can be done? The training opportunities in resource-poor countries are limited, but are improving. Many of these countries have national societies of child neurology and/or developmental medicine, which organize local symposia for continuing medical education. The number of regional societies is also increasing, and these societies are often able to host larger meetings and attract more international speakers and medical practitioners interested in child neurology. One of the remits of ICNA is to provide educational seminars throughout the world. These seminars are organized in collaboration with local medical societies, and draw upon the expertize of its members to provide lectures, case discussions and in some instances workshops. Furthermore, ICNA supports a website (http://www.icnapedia.org/) that provides web-based access to appropriate papers and management protocols. On the website there is access to training programmes throughout the world. These initiatives are being taken up by doctors in resource-poor countries, helping the development of child neurology in these regions. ICNA’s ability to meet its goals comes through expanded membership (http://www.icnapedia.org/icna/membership/membership_of_the_icna_2007040111/). It represents a tangible mechanism by which Western paediatric neurologists can support child neurology in resource-poor countries. Furthermore, members can contribute to the Help Every Region Organize fund that supports members from countries where incomes are lower. But, there are also other benefits of membership. Each member receives a copy of the International Review of Child Neurology series for each year of membership. Thus, there are many ways in which ICNA supports the development of child neurology in under resourced countries, but more support for ICNA is required from, paediatric neurologists from Western countries.

The WFN comes of age

The WFN comes of age

The Need to Connect

Autism: A Neurological Disorder of Early Brain Development. Roberto Tuchman and Isabelle Rapin (Eds.). 2006. London, England: Mac Keith Press for the International Child Neurology Association, 354 pp., $115.00/£65.00.Historically, the need or drive to connect to other humans is absent from the instincts that Freud considered fundamental to all humans, and from the work of Charles Darwin (1965), who heavily influenced Freud. Despite the fact that Darwin's last major publication focused on the expression of emotion in humans and animals, neither major theorist, both critical to the development of psychology, gave a place in their theories to the desire to connect to others. Yet new research consistently points to a desire for social connection in all of us and in our closest relatives on the evolutionary chain. When social relatedness is impaired, the results are devastating, and nowhere is this devastation more apparent than in a child with autism, the subject of this multi-authored volume.