- Finalize the structure of the Commission and define Commission members’ specific roles.
- Hold an initial brainstorming session among Commission members and invite the input of ILAE leadership.
- Establish short-term (one year) and long-term goals.
- Initiate collaboration with other important stakeholders, such as American Epilepsy Society, Centers for Disease Control, Epilepsy Foundation of America.
- Develop specific activities in the area of epilepsy care and education as it pertains to the Caribbean countries; support interaction with Latin American Commission; assess disparities and diversities within North American Commission countries (USA, Canada, and Jamaica).
Commission Activities from January 2006 to May 2007
The North American and the Latin American Commissions of the ILAE have joined forces in their commitment to improve the quality of epilespy care in Latin America. The primary vehicle used is improvement in the transfer of knowledge. Accordingly, the group has designed and is beginning to implement a three-level plan:
A. Level One: Selected epileptologists from the North American region, knowledgeable in Spanish or Portugese will visit medical centers in Latin America for 1-2 weeks. They wil be active in regional epilepsy meetings and spend time in epilepsy centers, teaching clinically and didactically, as well as participating in clinical discussions. The intent is to reach as many health care providers as possible. There will be four visiting professorships per year with an initial plan for a 5-year program. Under the leadership of Dr. J. Cavazos, this component of the educational initiative has received funds from an unrestricted grant from the USA pharmaceutical industry and is intended to start in the 2008 cycle.
B. Level Two: Medium term relationships will be established between North American and Latin American Commissions for exchange of information, primarily through electronic means, including video conferencing and particularly web-based exchanges and telephone conferences. This could include clinical aspects, training issues, and other case-based discussions.
C. Level Three: A long-term relationship will be established between North American and Latin American centers, possibly spanning from 1-3 years, involving training at the North American center of a number of staff and personnel from the trainee center in Latin America.
The Latin American Commission will participate actively throughout the process, and provide feedback in terms of results and direction of these educational initiatives.
2. Disparities in Epilepsy
This is a wide-ranging multistaged, project. It has started with an assessment of the evidence for disparities in epilepsy care, education, and outcomes and will result in two products. One is a systematic, critical review of the world literature, and the other is a "call for action" paper that identifies issues, the gaps in the evidence, and areas that need to be targeted for research or future action.
The project exemplifies collaboration of multiple organizations. Initial teleconferences and participation in systematic review has included representatives from important stakeholder organizations. The specific questions to be asked and the sytematic review of the literature are well underway. It is expected that this will foster future initiatives that explore interventions to address the issue of disparities in epilepsy care.
3. First Regional Caribbean Epilepsy Congress
This congress will be a keynote event in the development of epilepsy in the Caribbean region and Central America. It is planned for the spring of 2008 in Montego Bay, Jamaica, and it involves presentations from local epilepsy leaders as well as opinion leaders and academics from the North American Region.
In addition to this event, the leaders of the task force on epilepsy development in the Caribbean are making strong efforts to develop epilepsy awareness in the Caribbean countries. This includes supporting epilepsy chapters and activities of the global campaign against epilepsy in the region.
4. Island of Hispanola (Haiti) Project
The thrust of this project is to develop epilepsy clinics/centers in Haiti. Initial goundwork has uncovered a dramatic lack of epilepsy resources and expertise in epilepsy. The overaching goal is to create an epilepsy chapter in Haiti, and create core expertise and resources that will then extend throughout the rest of the country. Local physicians in Haiti have been identified who will help promote this, including Dr. Alex Elie, and Dr. Marcel Seveere. There is strong collaboration from the Latin American Commission in this regard, particularly from the President of the Latin American Commission and also from Dr. Santos-Villorio, President of the Dominican Republic League Against Epilepsy. The initial activities include providing training for technologists and epilepsy nurses from Haiti at a Dominican Republic Center. Further liaison and support will be developed as needs arise. Importantly, the Canadian League Against Epilepsy is also actively involved in this project through its Francophone resources. External resources being sought involve groups from the USA, Canada, and also a project in collaboration with the Dominican Republic and Latin American region to address the problem of Neurocysticercosis.
- 1st North American Regional Epilepsy Congress
San Diego, California, USA, was the site for the first North American Regional Epilepsy Congress hosted by the American Epilepsy Society (AES) at its 2006 Annual Meeting. This was the first of the biennial North American Regional Epilepsy Congresses that will be hosted at future AES Annual Meetings. Co-hosts were the Canadian League Against Epilepsy and the Jamaican Chapter of ILAE. the meeting attracted a totoal of 3,854 registrants with approximately 31% coming from countries other than the US, Canada and Mexico. First time attendees made up 14% and residents, students and fellows made up 16%. Eight individuals took advantage of a new developing countries discount on registration fees, offered by the AES. A total of 1067 abstract submissions were selected for presentation during five poster sessions. Thirty-five were selected for presentation at a platform highlights session. The North American Commission held its first Symposium, with presentations from Jamaica, Canada, USA and ILAE executive members. Plans are underway for the 2nd North American Regional Epilepsy Congress to be held in 2008.
- Curing Epilepsy 2007: Translating Discoveries into Therapies
Through the North American Commission, the ILAE provided support for this very successful NIH-led initiative. In March 2007, leading scientists, health care providers, and leaders of voluntary health organizations came together at the National Institutes of Health in Bethesda, MD to discuss potential targets and technologies for new therapies, with the goal of moving the field toward a cure. Details at: www.ninds.hih.gov/funding/research/epilepsyweb/curing_epilepsy_2007.htm.
The North American Commission continues to actively explore interactions with major organizations such as the American Epilepsy Society, Epilepsy Foundation of America, CDC, NIH, as well as Canadian, Caribbean and Latin American organizations. Opportuntiies for collaboration and development are continuously sought. Development of new chapters and fostering of education and excellence in epilepsy care are goals that the commissoin seeks to achieve.