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Commission Projects
The projects of the North American Commission (NAC) have been outlined in previous reports.
Progress has been made in all projects. A progress report follows:
Education Task Force:
Members: Sheryl Haut (Leader), Jean Gotman, Nizam Ahmed, Juan Ochoa, Jose Cavazos,Marco Medina (Latin American Commission), Elza Yakubian (Education Commission).Other participants: Jorge Vidaurre, Arthur Grant, Carly Mann.
The North American Commission of the ILAE is committed to improving the quality ofepilepsy care in Latin America by partnering with members and chapters of the Latin AmericanCommission. The primary route to achieve this goal is the transfer of knowledge. The NorthAmerican and the Latin American Commissions of the ILAE have joined forces to implement athree-level educational plan:
a) Level One “Partnering Epilepsy Centers in the Americas”:Dr. J. Cavazos negotiated an $110,000 unrestricted educational grant from Schwarz Foundation(a subsidiary of UCB Pharma) to fund individual visiting professorships. The task forceorganized a formal process to invite proposals, rate them and provide grants to approvedapplications. This program chooses faculty from epilepsy centers in North America, to travel tonew and/or emerging epilepsy centers in the Caribbean and Latin America, and continue thepartnerships via telemedicine. Visiting professors are active in local Epilepsy meetings andspend time in Epilepsy centers, teaching clinically and didactically, as well as participating inclinical discussions. The initial aim was to have three to four visiting professorships per yearwith an initial plan for a 5 year program. The program has been very successful. To date, thefollowing programs have been completed:
1) David Clarke, M.D. - University of Tennessee HSC at Memphis, has partnered withthe Jamaican Chapter of the ILAE and will extend his participation to the English-speakingterritories of the Caribbean and also the Dutch Antilles. He also received significant matchingfunds from the Le Bonheur's Children Medical Center to develop a telemedicine project there.
2) Patricio S. Espinoza, M.D. - Brigham & Women's Hospital of Harvard MedicalSchool, participated in a Neurological Update program (IV Seminario Internacional deNeurosciencias) in Quito, Ecuador, at the Universidad San Francisco de Quito on April 1st-3rd,2008. He also performed a teleconference with six sites from different regions within Ecuador.Photographs of the event are posted on line and can be viewed at http://picasaweb.google.com/PS.Espinosa/IVSeminarioInternacioncalEnNeurociencias2008?authkey=lm0QT95yXOA.
3) Jorge Burneo, M.D. - University of Western Ontario, Canada, travelled to Peru in July2008 and participated in a series of events with the Peruvian Chapter of the ILAE.
4) David Labiner, M.D. - University of Arizona, partnered with neurologists in CostaRica quite successfully, is establishing teleconferencing later this year, and he plans to returnnext year for a second visit.
The following partnerships are being planned in the short term:
1) Greg Krauss, M.D. - John Hopkins University, partnering with Panama.
2) Jose Cavazos, M.D. - University of Texas Health Science Center is scheduled to visitthe Hospital Infantil de Mexico, which is the main pediatric hospital in Mexico City. Dr.Cavazos is establishing a partnership between the Epilepsy Centers of the two institutions. Thevisit is scheduled for November 20-27, 2008.
b) Level Two “Web-based collaboration”: Medium term relationships are being establishedbetween North American and Latin American partnering centers for exchange of information,primarily through electronic means, including video conferencing and particularly web-basedexchanges and telephone conferences. This includes clinical aspects, training issues, and othercase-based discussions. Some partnerships are beginning to enter this process.
c) Level Three “Long term training”: A long-term relationship will be establishedbetween North American and Latin American centers, possibly spanning from 1-3 years,involving training at the North American centre of a number of staff and personnel from thetrainee centre in Latin America. This stage has not been reached yet, as the projects are theirearly stages.Throughout the entire process, the Latin American Commission has been informed andinvolved, and has provided feedback and assistance in the partnering process.
Disparities in Epilepsy Task Force:
Members: Jorge Burneo (Leader), S. Wiebe (Canada), A. Hauser (USA), D. Thurman (USA,Centers for Disease Control), M. Jacobs (USA, NIH), K. Parko (USA, Public Health Service),C. Begley (USA), N. Jetté (Canada), J. Pellock (USA).
This task force has completed its first goal, i.e., a systematic review of the evidence ondisparities in epilepsy. The resulting manuscript is being submitted to the ILAE executive forassessment and approval for submission as an ILAE sponsored publication. The manuscriptencompasses a systematic, critical review of the world literature, and a “call for action” thatidentifies issues, gaps in the evidence, and areas that need to be targeted for research or futureaction.
The project exemplifies collaboration of multiple and key organizations, such as the NINDS, theCDC, the Canadian League, the NAC, and experienced researchers in the field. It is expectedthat this will foster future initiatives that explore interventions to address the issue of disparitiesin epilepsy care more globally. For example, using the experience gained in the NAC disparitiestask force, a new project is being launched through the ILAE Commission in Epilepsy Care toassess disparities in Latin America and Asia.
First Regional Caribbean Epilepsy Congress Organizing Committee
Members: Amza Ali (leader, Jamaica), Robert Fisher (USA), Jeff Noebels (USA), SharonWhiting (Canada, formerly Jamaica), David Clarke (US formerly from Antigua), Neil Cruz(USVI)
Clinicians from English speaking Caribbean countries gathered at the First North AmericanRegional Caribbean Congress of Epilepsy, which took place in Montego Bay, Jamaica fromMay 30-31, 2008. The event was a truly collaborative endeavor involving the North AmericanCommission of the International League Against Epilepsy (ILAE), the Jamaican LeagueAgainst Epilepsy (JLAE), the Jamaican Epilepsy Association, the American Epilepsy Society(CLAE), and The Canadian League Against Epilepsy, as well as the international corporationsNovartis and Bank of Nova Scotia.
Under the leadership of Dr Amza Ali (president of the Jamaican League Against Epilepsy) andDr. Robert Fisher (North American Commission of the ILAE), co-chairs of the congress, thisinaugural and well attended event marks a new chapter in the development of academicactivities focusing on epilepsy in the English speaking Caribbean region.The high profile of the congress was evident by the participation of regional dignitaries and ofregional and international speakers. During the official opening ceremony, the HonorableRudyard Spencer, Minister of Health of Jamaica, eloquently acknowledged the difficulties andstigma facing persons with epilepsy, and pledged his commitment to work with the JLAE to improve the care and quality of life of people with epilepsy in Jamaica. Professor Peter Wolf,president of the ILAE, gave the opening address in which he emphasized the significance of thisacademic event, and acknowledged the effort of organizers and contributors in bringing thecongress to fruition.
Although inclement weather impeded the attendance of some of the international and regionalspeakers, all were able to give their presentations via telecast. International speakers includedDrs. Robert Fisher (USA), Dennis Spencer (USA, president of the AES), Martin Brodie (UK,ILAE treasurer), Jeffrey Noebels (USA), William Theodore (USA), Kimford Meador (USA),Eugene Ramsay (USA), Basim Uthman (USA), David Clarke (USA-Jamaica), Franz ChavesSell (Costa Rica), and Samuel Wiebe (Canada, chair of North American Commission of ILAE).These speakers covered a wide variety of topics, ranging from basic clinical principles throughmedical and surgical management, to cutting edge genetic concepts.
Regional speakers and session chairs included Drs. Amza Ali (Jamaica, president of the JLAE),Colin McKenzie (University of the West Indies), Hafeezul Mohammed (President of theAssociation of Consultant Physicians of Jamaica), Professor Robert Gray (University of theWest Indies), Judy Tapper (Jamaica), Rainford Wilks (Jamaica), David Corbin (Barbados),Sean Marquez (Barbados), Roberto Rico (Curacao) and Neil Cruz (US Virgin Islands).Speakers in these sessions provided insightful descriptions of their work in the epidemiological,medical and psychosocial aspects of epilepsy in the Caribbean region. The sessions culminatedin a lively question and answer period which engaged a keen audience and extended into theevening.
The success of the First North American Regional Caribbean Congress of Epilepsy allows us toenvisage an era of new initiatives and collaborations that will lead to better care and quality oflife of patients with epilepsy in this region.
Island of Hispanola (Haiti) Project Task Force
Members: Lionel Carmant (leader, Canada), Marco Medina (Latin American Commission),Diogenes Santos-Villorio (Dominican Republic), Michel Baldy Mouliner (EUREPA), Alex Elie(Haiti).
As of June 4, 2008, la Clinique d’épilepsie de Port-Au-Prince is up and running.Haiti and the Dominican Republic constitute the Island of Hispaniola. Unlike the Dominicanepilepsy chapter, which is well structured, Haiti had no neurologist, no trainedelectroencephalographers, and it only had access to two conventional EEG machines (one ofwhich is 8-channels), to serve a population of 8 million people. EEG recordings wereinterpreted outside of the country.
The NAC, at its first business meeting in 2006 identified Haiti as a region with some of themost urgent needs for improved epilepsy care. The Hispaniola Task Force was therefore createdto assess the needs for Haiti and the Dominican Republic and to help meet these needs.The Task Force is chaired by Lionel Carmant, past President of the Canadian chapter, andinclude Diogenes Santos Viloria, President of the Dominican chapter, Alix Elie, a neurosurgeonfrom Haiti who follows most of the patients with epilepsy, Marco Tulio Medina, President ofthe Latin American Commission and Michel Baldy Moulinier, Past President of the FrenchLeague who had agreed to share with us his experience in the African Region.The
Task Force rapidly identified the most significant needs of the Island. The first priority wasto help provide access to proper epilepsy care to the Haitian population. Second, help wasneeded to eradicate neurocysticercosis from the Island of Hispaniola. Finally, support for thedevelopment of an Epilepsy Surgery program would be highly desirable. To reach theseobjectives, the Task Force was enriched by inviting collaboration from three additionalindividuals, i.e., Dr. Marcel Sévère, a young Haitian pediatrician eager to learn how to interpretEEGs, Dr. Hector Hugo Garcia from Peru, a world leader in neurocysticercosis epidemiologicalresearch, and Dr. Diones Rivera, a prominent Dominican Neurosurgeon leading the effort inepilepsy surgery development in Dominican Republic.
A plan of action was assembled, looking at simple and attainable goals. For the Haiti epilepsyclinic, training a nurse and an EEG technologist in Haiti was needed. Dr. Santos Viloria kindlyagreed to provide the training in Dominican Republic. Dr Sévère also needed training in EEGinterpretation and he agreed to come to the EEG laboratory in Montreal to train. Finally, theHaiti clinic required modern EEG equipment. To this end, Dr. Jean Gotman, owner of theMontreal-based EEG Stellate company, and also a member of the NAC, generously provided anEEG system. He also offered to provide training for the technologist to operate and repair thesystem. Unfortunately, a Canadian visa could not be obtained for the technologist despitenumerous attempts and letters of support.
On June 4, 2008, Dr Carmant and Genevieve Arbour, a Canadian EEG technologist, visitedHaiti to launch the newly established Clinique d’épilepsie de Port-Au-Prince, to install the newequipment, to provide support for launching the clinic, and to train the local technologist in theoperation of the new Stellate EEG system. During the first week we were able to evaluate 12patients with a variety of backgrounds. Not only new diagnoses made, but non-epileptic eventswere identified and unnecessary medication was discontinued. The clinic remains a success andperforms from 2-5 EEG studies per day.
The task force is now ready to tackle the neurocysticercosis project by assessing its prevalencein the endemic region at the border of the Dominican Republic and Haiti. A pilot study has beendesigned to this end. We also hope to launch the Epilepsy surgery program in 2009. We wish toacknowledge the contribution of our two latest additions to the Task Force, Dr Farah Lubin, who helped us look for funding for the Haiti clinic, and Dr Jose Ferreira who at the 2007 AESmeeting agreed to provide additional expertise to both the neurocysticercosis and Epilepsysurgery projects.
We are extremely pleased with strides made in a relatively short period of time, and we expectthis project to develop further as it gains momentum. We wish to thank all the Task Forcemembers as well as the NAC members for their availability, support and devotion to theseprojects.
Other Activities of the Commission 2nd North American Regional Epilepsy Congress:
Seattle, Washington, USA, will host the second North American Regional Epilepsy Congressduring the American Epilepsy Society’s (AES) 2008 Annual Meeting. This is the second ofongoing biennial North American Regional Epilepsy Congresses that will be hosted at futureAES Annual Meetings. Co-hosts will be the Canadian League Against Epilepsy and theJamaican Chapter of the ILAE.
The keynote event will be the North American Region Symposium, entitled “Epilepsy and theworld: Neuroinfections,” and it will take place on Monday, Dec 8th, from 7pm to 9:30pm.Infectious and parasitic disorders of the central nervous system are important causes of epilepsyworldwide. Study of these conditions also provides a unique opportunity to understand themechanisms of epileptogenesis and ways in which it can be altered. Also, because many ofthese conditions are treatable and preventable, there is great potential for impacting the burdenof epilepsy around the world. A panel of international experts from developed and developingcountries will address the mechanisms, impact, management, and current challenges related tothe most common neuroinfections in epilepsy. The objectives of the symposium are: A) To obtain up to date evidence based information about the mechanisms of epileptogenesis in neuro-infections. B) To review the most common neuroinfections producing epilepsy worldwide. C) To review the challenges of managing epilepsy in the context of anti-infectious agents. D) To obtain an overall view of the impact of neuroinfections on epilepsy. We expect that the program will be of interest to Clinicians, trainees, and researchers.
The program includes faculty from China, Peru, Africa, UK, and USA, who are experts in thefields of Neurocysticercosis, Malaria, HIV-AIDS, pathogenesis of epilepsy in neuro-infections,and therapy. The program is available at http://www.aesnet.org/go/meetings-and-events/annual-meeting.
Other
The North American Commission continues to actively explore interactions with majororganizations such as the American Epilepsy Society, Epilepsy Foundation of America, CDC,NIH, as well as Canadian, Caribbean and Latin American Organizations. Opportunities forcollaboration and development are continuously sought. Development of new chapters andfostering of education and excellence in epilepsy care are goals that the commission seeks toachieve.
Samuel Wiebe MD, MSc, FRCPC
Chair |
