About the Commission on North American Affairs
The NAC holds quarterly teleconferences and annual face-to-face meetings at the AES. Reports are provided annually to the ILAE executive, in accordance with ILAE stipulations for Regional Commissions, and annual updates are provided to each of the three constituent chapters (Canada, Jamaica, USA).
The Commission’s overall goal is to improve the delivery of epilepsy care throughout the Americas and the Caribbean.
All task forces establish agendas with tangible deliverables and are encouraged to form work groups that include non-Commission individuals as needed to achieve their goals. The agendas of all task forces are discussed and approved by the NAC and the budget is assembled and submitted in accordance with these strategies. Task forces hold regular telephone conferences throughout the year, and meet face-to-face once a year usually at the AES meetings. Progress reports are given to the NAC members at each of their meetings, and discussion of the reports inform further actions. By the nature of its goals and geography, the NAC and its task forces work closely with other ILAE Commissions and Chapters, in particular with the Latin American Regional Commission, the ILAE Therapeutics Commission (Task Force for Epilepsy Surgery), and the Caribbean chapters.
To achieve its goals, the NAC constituted five task forces:
A. Task Force on Education
The centerpiece of the taskforce activity is the Partnering Epilepsy Centers in the Americas (PECA) program. The program seeks to promote and improve the care of persons in the Americas living with epilepsy, through education, advocacy and research. PECA aims specifically to support and expand exchange programs between the members of the Latin American Commission, the North American Commission and the Caribbean chapters of the ILAE, in order to significantly impact epilepsy care in these regions. The taskforce reviews applications for visits and periodically reviews the progress of the program. The North American commission has supported visits to the Costa Rica, Panama, Mexico, Argentina, Ecuador, Peru among other countries. The taskforce is expanding the program to facilitate training visits from Latin America to North America.
B. Task Force on Harmonization of Regulatory Activities
Purpose: To discuss new approaches to regulatory (FDA, EMA) approval for antiepileptic drugs – how should they change?
- Enhancing safety issues in controlled trials:
There is increasing concern about exposure to placebo even during add-on trials, as data indicates possible important consequences, including seizure worsening and SUDEP. There are possible new trial designs that would reduce placebo exposure.
- Pediatric issues:
The task force will make a strong case to eliminate trials in pediatric focal epilepsy if adults have been shown to respond (this has already been agreed to by EMA). For other seizure types, once efficacy has been demonstrated with the same seizure type in an adult trial to the satisfaction of the regulatory agencies, then we feel the shortest trial that will demonstrate an effect in children should be acceptable. This is particularly true for pediatric syndromes with daily seizures (West syndrome, Lennox-Gastaut Syndrome, absence epilepsy).
C. Task Force on Stigma in Epilepsy
Purpose: The purpose of this Task Force is to improve our understanding and knowledge about stigma and epilepsy, and to help plan future initiatives to address this important issue in those with epilepsy and their families.
- To carry out an international systematic review of the published peer review literature focusing on stigma in epilepsy, specifically addressing:
- Available tools to measure stigma in epilepsy
- Frequency and nature of stigma towards epilepsy
- Determinants/predictors of stigma in epilepsy
- Impact of stigma on other outcomes
- Existing effective interventions to reduce epilepsy-related stigma
- To make recommendations regarding the best methods to measure stigma and to eliminate/reduce stigma in epilepsy.
- To discuss future directions to address stigma in those living with epilepsy.
D. Task Force for Caribbean Development (English speaking Caribbean)
The goals of the Task Force for Caribbean Development are the following:
- Education of medical professionals and laypersons about epilepsy, including the reduction of stigma. The cornerstone of this initiative is the biennial NARCCE which began in 2008. The next (4th) will be in St Lucia in 2014.
- The development of Caribbean-wide telemedicine for improved epilepsy care, including case discussions with Yale and other Level 4 epilepsy centres in North America for epilepsy surgery.
- The formation of a regional Chapter of the ILAE; its Constitution and Bylaws were recently approved by the ILAE. Election of officers for the new Society will soon commence.
- Collaborative research.
E. Task Force for Hispaniola Development (Haiti and Dominican Republic)