ICNC2018 , ICNC2020 and new ICNA initiatives
Following a tremendously successful 14th ICNA Congress (ICNC2016) which was held in Amsterdam last week in cooperation with the Dutch Society of Pediatric Neurology and which offered a strong, clinically relevant and scientifically rigorous program and unique opportunity to network with > 1580 enthusiastic participants from around the world, I am writing on behalf of the ICNA Executive Board to provide you with certain key updates:
- I am very pleased to inform you that Dr. Jo Wilmshurst has been elected as the President-elect of ICNA (2016-2018) and will be assuming her role as President of ICNA in May 2018 at the ICNC2018 in Turkey. Please join me in congratulating Dr. Wilmshurst who has made seminal contributions to ICNA over many years.
- Please also remember to add our next ICNC2018 to your calendars. This 15th ICNA congress will now be taking place in India. The 2018 ICNA congress was originally scheduled to be held in Antalya, Turkey. Based on recent events in the region, the local organisers have made the very difficult, proactive and brave decision to withdraw from running the congress. This decision was not made easily and the Executive Board of the ICNA have great respect for our colleagues in Turkey. Their decision was based on the need to put the safety of members first. Further information about the specific dates and location in India for the 2018 ICNC will follow.
- For your longer term planning, the site for our ICNC2020 has also been chosen and will be taking place from October 19th to 23rd, 2020 in San Diego, CA, USA in cooperation with the Child Neurology Society.
- We further look forward to many new exciting initiatives for ICNA including:
- Formation of the Council of the Future Leaders of ICNA composed of senior neurology trainees and junior faculty
- Expansion of the Global Burden of Diseases Research Fellowship Seed Grants
- Development of Research Portals on ICNApedia to facilitate links between resource-rich and resource-poor regions to further international clinical and research collaborations which will be of mutual benefit to the children, their families, physicians and researchers in promoting understanding of the neurological diseases' pathophysiologies and for the development of novel targeted therapies for RCTs.
- Development of an online Textbook of Child Neurology on ICNApedia with annually updated chapters
- Launching of a distance Research mentorship program for neurology trainees and junior faculty
- Expansion of our research methodology symposia at all future ICNCs
- Continued recruitment of submissions to our Journal of ICNA (JICNA)
- Continued expansion of resources (online lectures, guidelines, clinical videos, neuroimages, journal watch, fellowship opportunities, WHO alerts, etc.) on our ICNApedia website http://icnapedia.org/
- Development of a medical/laboratory instrument transfer portal on ICNApedia.
We look forward to working with you and hope that you will join us in developing and contributing to our initiatives to promote excellence in clinical care, education and research in Child Neurology throughout the world though our current membership of > 2,000 members from all geographic regions.
- Please also help us spread the word about the important role that ICNA has to play in supporting the field of Child Neurology by passing our details to your colleagues and encouraging them to join us.
As you know ICNA Membership is FREE of charge. It is easy to join us. Applicants must submit an online ICNA Membership Application Form at http://icnapedia.formbin.com/forms/join. We look forward to working with you toward an exciting, progressive and enlightened future, through our international network of Child Neurology, to benefit and maximize the potential of children in all corners of the world,
With kindest regards,
Ingrid Tein MD, President of ICNA
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Researchers from Johns Hopkins Bloomberg School of Public Health have found that if a new mother has a very high level of folate right after giving birth – more than four times what is considered adequate – the risk that her child will develop an autism spectrum disorder doubles. Very high vitamin B12 levels in new moms are also potentially harmful, tripling the risk that her offspring will develop an autism spectrum disorder. If both levels are extremely high, the risk that a child develops the disorder increases 17.6 times. Folate, a B vitamin, is found naturally in fruits and vegetables, while the synthetic version, folic acid, is used to fortify cereals and breads in the United States and in vitamin supplements.
The preliminary findings will be presented May 13 at the 2016 International Meeting for Autism Research in Baltimore. While it was known that folate deficiency in pregnant mothers is detrimental to the child’s development. the current research suggests that excessive amounts may also cause harm.
Folate is essential in cell growth and promotes neurodevelopmental growth. Deficiencies early in pregnancy have been linked to birth defects and to an increased risk of developing an autism spectrum disorder. The Centers for Disease Control and Prevention says that one in four women of reproductive age in the U.S. have insufficient folate levels. Levels are not routinely monitored during pregnancy.
Autism spectrum disorder is a neurodevelopmental condition characterized by social impairment, abnormal communication and repetitive or unusual behavior.
For the study, researchers analyzed data from 1,391 mother-child pairs in the Boston Birth Cohort, a predominantly low-income minority population.
The mothers were recruited at the time of their child’s birth between 1998 and 2013 and followed for several years, with the mother’s blood folate levels checked once within the first one to three days of delivery. The researchers found that one in 10 of the women had what is considered an excess amount of folate (more than 59 nanomoles per liter) and six percent had an excess amount of vitamin B12 (more than 600 picomoles per liter).
The World Health Organization says that between 13.5 and 45.3 nanomoles per liter is an adequate amount of folate for a woman in her first trimester of pregnancy. Unlike with folate, there are not well-established thresholds for adequate vitamin B12 levels.
A large majority of the mothers in the study reported having taken multivitamins – which would include folic acid and vitamin B12 – throughout pregnancy. But the researchers say they don’t know exactly why some of the women had such high levels in their blood. It could be that they consumed too many folic acid-fortified foods or took too many supplements. Or, they say, it could be that some women are genetically predisposed to absorbing greater quantities of folate or metabolizing it slower, leading to the excess. Or it could be a combination of the two.
More research is needed in order to determine just how much folic acid a woman should consume during pregnancy to have the best chance that she will have optimal blood folate levels to ensure her offspring’s health. With many types of vitamin supplements, the conventional wisdom has been that too much is not harmful, that the body will flush out the excess. That may not be the case with folic acid and vitamin B12.
This study is part of an ongoing prospective birth cohort study on early life determinants of autism in the Boston Birth Cohort, co-led by Fallin and Wang, MD, MPH, ScD, Zanvyl Krieger Professor, Director, Center on the Early Life Origins of Disease at Bloomberg School, and is supported by the Maternal and Child Health Bureau (R40MC27443).
However it has to be stressed that the above study has not shown a causal link between taking folic acid and autism. The researchers took blood tests of close to 1,400 mothers between one to three days after they gave birth and found that about 10% of the mothers had very high levels of folate, beyond recommended amounts, and that these women were also more likely to have a baby that would later be diagnosed with autism spectrum disorder.
On May 10, the United States Preventative Services Task Force released a draft update to its existing recommendations on folic acid, and once again the group is advising all women who are planning or capable of getting pregnant take a daily supplement of 0.4 to 0.8 mg of folic acid.
It is also important to note that the above study is presented at a conference and have not been peer-reviewed or published in a journal.
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Dear colleagues,
It is with great pleasure that we invite you to attend the 14th International Child Neurology Congress from May 1st – 5th, 2016 in Amsterdam, the Netherlands.
The theme of ICNC 2016 will be:
"Bridging Worlds; Child Neurology from a Global Perspective".
The congress will reach and unite professionals in pediatric neurology from all over the world by offering a program that is of global relevance and has a significant educational impact, and by facilitating participation of delegates from all countries.
With our innovative program format, we will offer:
- complimentary breakfast teaching sessions
- afternoon meet-the-expert interactive tutorial sessions
- evening masterclasses
- four morning parallel sessions, that will each include 3 lectures given by experts in the field, covering current state-of-the-art, controversies or consensus, and expected developments
- each day, one of these parallel sessions will be specifically devoted to differences in diagnostics and treatment of pediatric neurological disorders across the world
- four afternoon platform sessions that start with an introductory lecture given by an experienced chair
- lunch symposia on specific child neurology topics, selected from submitted session proposals
- 25 travel bursaries, as well as significantly reduced registration fees, for participants from low-resource countries.
The 2016 ICNC meeting will be held at the Amsterdam RAI Convention Center, a modern venue that is within ten minutes reach of Schiphol Amsterdam Airport, providing direct connections with most continents and many countries (100 non-stop intercontinental and 300 direct European destinations). The venue is close to the heart of historical Amsterdam. Thousands of hotel rooms in all possible price categories, ranging from luxury hotel chains to low-budget accommodation, are available within walking distance from the conference venue.
We kindly invite you all to submit proposals for lunch symposia (further information available on www.icnc2016.org, website open from May 1st) and abstracts (online submission open from June 1st).
Please mark your calendar! We look forward to welcoming you all in the beautiful city of Amsterdam, during the season of tulips, for the 14th ICNC from May 1st to 5th 2016.
On behalf of the organizing, scientific and educational committee, and the Dutch Society of Pediatric Neurology,
Kees Braun
Chair of the ICNC 2016 organizing committee
President of the Dutch Society of Pediatric Neurology
Michèl Willemsen
Chair of the ICNC 2016 scientific committee
Coriene Catsman-Berrevoets
Chair of the ICNC 2016 educational committee
Lilian Sie
Treasurer of the ICNC 2016 organizing committee
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Background
Although there is much information on the internet about epilepsy and seizures, there is a glaring absence of a single source of information that aligns with the international classification and provides an organized presentation of the many seizure types and syndromes to help with diagnosis and treatment. This information gap was recognized and led to the ILAE's EpilepsyDiagnosis.Org project which was formally launched in September 2014. It has been a unique resource in medicine and has harnessed the power of the internet to present the complexity of the significant amount of new information now available about the epilepsies and their etiologies, in a manner that is concise, current and accessible to a global audience. It is as relevant to those in primary and secondary health care settings as it is to those in tertiary epileptology practice. It is also showing promise as an instructional and training resource for those who are new to medicine.
The project EpilepsyDiagnosis.org was conceived and developed by the ILAE's Commission on Classification and Terminology (2009-2013), and this Commission's Diagnostic Manual Taskforce (Table 1), in partnership with eResearch at the University of Melbourne, Australia. The project has been further developed by the ILAE's Commission on Classification and Terminology (2013-2017), and this Commission's EpilepsyDiagnosis.Org and Syndromes Task Force (Table 1).
Since the release of EpilepsyDiagnosis.org, its reach has steadily increased, month on month. Currently approximately 10,000 unique visitors access the site each month from around the world, viewing EpilepsyDiagnosis.Org pages more than 40,000 times per month. Users of the website span professional groups that range from those in primary care to those working in tertiary health care settings (Table 1). The ongoing growth in user engagement with EpilepsyDiagnosis.Org continues to occur 'organically', through relevance of the website content to those in clinical practices where epilepsy is diagnosed, and managed.
Goals
The goals of EpilepsyDiagnosis.org are:
- to make available, in an easy to understand form, the latest concepts relating to seizures and the epilepsies.
- to assist clinicians, particularly those in primary and secondary health care settings anywhere in the world, who look after people with epilepsy to diagnose seizure type(s), classify epilepsy, diagnose epilepsy syndromes and define the etiology.
- to provide an educational resource that is current for personal learning and small group teaching settings.
What you will find on the EpilepsyDiagnosis.Org website
The structure of the site reflects the importance of seizure type, syndrome, and etiology in clinical practice, and how these aspects of the epilepsy inter-relate. On the site you will find:
- seizure type classification with video examples of seizure types – the availability of video is a unique feature of this site, allowing clinicians to clearly see the features of seizures, including distinguishing features from other similar seizure types. A short and instantaneous registration process is required to view the video section and this is open to anyone, anywhere in the world with an internet connection. Individuals and their families have kindly given consent for videos to be freely available in this way.
- seizure types presented with differential diagnoses, including a comprehensive section on epilepsy imitators – where you will find full descriptions of non-epileptic paroxysmal phenomena that can mimic seizures.
- focal seizure types flexibly described by their features, and by features that suggest anatomical localization (Figure 1).
- epilepsy syndromes presented in a comprehensive list, including details on their clinical presentations, EEG and imaging features (with images to illustrate these) and current understanding of syndrome etiologies
- epilepsy etiologies presented in a comprehensive but concise section that includes most notably genetic and structural etiologies, but also including content on metabolic and immune etiologies. The etiology section provides concise and clinically relevant information on phenotypes seen with more than 50 genes associated with epilepsy, as well as the phenotypes seen in chromosomal abnormalities associated with epilepsy.
In 2016 a significant upgrade has occurred to the structural etiologies content, making available the most current knowledge regarding brain abnormalities associated with epilepsy, especially newer information regarding their genetic bases. The site now includes a 'tour de force' of the following structural etiologies for epilepsy:
- malformations of cortical development: focal cortical dysplasia, tuberous sclerosis, lissencephaly, subcortical band heterotopia, grey matter heterotopia, polymicrogyria, hemimegalencephaly, schizencephaly and hypothalamic hamartoma
- vascular malformations: cerebral angioma, Sturge-Weber syndrome and arteriovenous malformation
- hippocampal sclerosis
- hypoxic-ischemic: stroke and hypoxic ischemic brain injury
- traumatic brain injury o tumors: dysembryoplastic neuroepithelial tumors and ganglioglioma, and
- porencephalic cysts
EpilepsyDiagnosis.Org complements resources available through Epileptic Disorders, the ILAE's official educational journal, for professionals with particular interest in epilepsy. However, EpilepsyDiagnosis.Org through its open access format, also provides an increased reach to health professionals from primary and secondary health care settings who see patients with epilepsy, and is relevant for community organizations and for the general public due to the simple and clear presentation of information.
Please visit and use this site at https://www.epilepsydiagnosis.org/. Your comments and suggestions are welcome in the Give Feedback section.
| Table 1: Visitors to EpilepsyDiagnosis.Org by professional background (top 10, accounting for 52% of all visitors) |
| Secondary Health Care - Adult Neurology 8% Secondary Health Care - Pediatrics General 7% Postgraduate Medical Trainee - Adult Medicine 6% Secondary Health Care - Pediatric Neurology 6% Tertiary Health Care - Pediatric Neurology 6% Tertiary Health Care - Adult Neurology 5% Primary Health Care – General Practice 4% Postgraduate Medical Trainee - Pediatric Medicine 4% Primary Health Care - Other 4% Tertiary Health Care - Pediatric Epileptologist 4% |
| Table 2: Individuals responsible for the development of EpilepsyDiagnosis.Org |
| Members of the ILAE's Commission on Classification and Terminology (2009-2013), and this Commission's Diagnostic Manual Taskforce: Ingrid Scheffer, Sameer Zuberi, Sam Berkovic, Pippo Capovilla, Helen Zhang, Doug Nordli, Jeff Buchalter, Lynette Sadleir, Anne Berg, Mary Connolly, Laura Guilhoto, Edouard Hirsch, Sam Wiebe, Christian Korff, Andrew Lux, Yoshimi Sogawa, Elaine Wirrell, Stephan Schuele, Kate Riney. |
| Members of the ILAE's Commission on Classification and Terminology (2013-2017) EpilepsyDiagnosis.Org and Syndromes Taskforce: Roberto Caraballo, Kate Riney, Norimichi Higurashi, Vivek Jain, Floor Jansen, Mike Kerr, Lieven Lagae, John Paul Leach, Ingrid Scheffer, Rima Nabbout, Elizabeth Thiele, Federico Vigevano, Khaled Zamel, Sameer Zuberi, Muhammad Salisu, Nerses Bebek. |
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