Chapter Name: American Epilepsy Society
Report By: Eileen M. Murray
Summary of Activities:
Board and Governance
Realigned committees under the Council on Education for more effective oversight and execution of programs. Created an Early Career Grant Committee. Gathered data on gender diversity in AES leadership roles and awards to inform work of future task force. The Basic Science Task Force, appointed by Dr. Mizrahi, identified important actions we are now implementing to re-engage and better serve our basic science community. AES became a member of the AMA Specialty and Service Society, as part of the Neurology Section Council. The Board approved Key Performance Indicators to better track progress against strategic goals.
Impact factor rose to 9.33. We are completing a transition to new publisher, Sage Publishing, effective with publication of the January/February 2019 issue. It is expected that with this new partnership we will expand the reach and impact of the journal.
First 21 modules of Fellowship Curriculum launched. Performance Improvement CE Module on Improving Outcomes for Transitions from Pediatric to Adult Epilepsy Care produced and approved by ABPN for MOC credit. Self-assessment Volume 5 launched with ABPN approval for MOC credit, Volume 6 in development. Ask-the-Expert webinar on Infantile Spasms, Transition from Pediatric to Adult Care both produced and also available online. Two Depression and Anxiety Handouts were created, for pediatric and adult. AES led the 4th biennial PAME conference – AES provided education, fundraising and meeting management. Online education module on diagnosis and treatment of LGS – funded by grant from Lundbeck and produced in partnership with the France Foundation and LGS Foundation, available via MedScape. New initiative launched to deepen engagement of APPs and better meet their resource needs launching at this annual meeting.
2018 Annual Meeting
Number of abstracts – 1,350 accepted. Investigator Workshops – submissions tripled to 37, accepted 17. Held a CAAE joint international forum. Fellows program continues to evolve in response to fellow feedback – expanded professional development sessions, more opportunities for peer-to-peer networking, more focused mentor connections. We expanded the career pathways panel and career skills training sessions, open to all attendees.
- Publication of Practice Guideline Update on the Efficacy and Tolerability of New Antiepileptic Drugs: Treatment of new-onset epilepsy and Efficacy and Tolerability of New Antiepileptic Drugs: Treatment-resistant epilepsy Guidelines – joint effort with AAN. AES commented on the AAN on Practice Advisory on timing of antiepileptic medication withdrawal in seizure-free patients.
- Published AED Reference Table in print and online. AES submitted a comment letter to the FDA on streamlining the development of new, potentially less expensive, drugs and devices to improve the range of treatment options available to patients, particularly for treatment of rare or orphan indications.
- There have been two revisions to AES position statement on Cannabis as a Possible Treatment for Epileptic Seizures.
- Position Statement on Immediate Access to Accepted Treatments for Infantile Spasms was approved and endorsed by 10 epilepsy organizations.
- AES provided a letter of support for ICD-10 Code for Dravet Symdrome. We submitted a vcomment letter to Tricare regarding concerns about change in policy on access to treatments for infantile spasms – requiring failure on two therapies before approval for ACTH – referenced AES guideline.
- Two AES-led guideline initiatives in progress – ECOG (with AAN and ACNS) and update ot the Epilepsy Surgery guideline (with AAN and American College of Neurosurgeons.
- Work is also in progress on AAN-led Joint Guideline on Women and Epilepsy.
- A Laser Interstitial Thermal Therapy insurance denial appeal guidance was posted.
- We submitted joint comment with NAEC on issues specific to epilepsy in CMS proposed changes to E/M coding and signed on to AMA and AAN general letters to CMS on same subject – the final rule addressed many of the concerns.
- Infantile epilepsy and refractory status epilepticus were submitted as topics in response to a PCORI call for consideration for systematic review which could support an evidence-based guideline. PCORI will be moving infantile epilepsy forward for preliminary scope review.
- We submitted AES comment on ILAE draft classification of neonatal seizures.
We are submitting a request to the National Uniform Claim Committee to have epilepsy code added for provider specialty.
- 23 early career proposals funded (total of 86 applications) – totaling $1,030,000 in funding ($872,500 AES funds and $157,500 partner funds).
- We continue to support the Susan Spencer Clinical Research Scholarship – jointly funded with AAN and EF at $130,000 for two years. Seed grants and workshop grants were awarded totaling $150,000.
- The AES/NINDS Epilepsy Benchmarks Stewards Committee is drafting reviews of progress and opportunities in each Area. NINDS has invited the AES committee to participate in drafting agenda for NINDS Curing Epilepsies 2020 Conference after which new benchmarks will be drafted. A new aspect is inclusion of patient advocate input through representatives selected from ELC.
- A new Poster session was added to the annual meeting highlighting research of a diverse community.
- The research council partnered with the Fellows committee on targeted mentorship support to fellows who identify with underrepresented minorities.
- Development is underway on new and improved EpiPort online self-directed clinical research training modules and mentorship program.
- Planning is underway for a Sleep & Epilepsy workshop for spring 2019 – funded by private foundation with carryover funds from a CURE project.
- Current membership stands at 4,380, up from 4,082 at this time last year. New members to date this year total 975.
- More than 45 new FAES candidates approved
- AES continues to have strong industry support, with $1.2-million for Annual Meeting grants, sponsorships and advertising and additional program support of nearly $700,000.
- We have achieved 100% giving participation by Board and Council chairs.
- The streamlined donor recognition cycle will cover November 1 – October 31 each year.
- AES has also received two significant bequests for endowments.
AES issues expert alerts on CBD and Epilepsy and on approval of Epidiolex and rescheduling of FDA-approved medications containing pharmaceutical-grade CBD. AES as a member of ELC signed on to Epilepsy Leadership Council policy agenda which includes support for increased research funding; support for funding for surveillance, data collection and prevention activities; and opposition to policies which limit access to care.
Collaboration and Partnership
AES continues as the administrative home for, and member of, Epilepsy Leadership Council. With the Epilepsy Foundation, AES is a partner in National Epilepsy Education and Awareness Collaborative, and represented at EF Research Roundtable and Learning Health Initiative. AES is a partner in the CNF Infantile Spasms Awareness Network (ISAN) and Transitions Project Advisory Committee (TPAC). With ILAE, AES partners to support the Joint Translational Task Force and is engaged in helping to secure U.S. support for placing epilepsy on the WHO Executive Committee agenda. AES also continues to support ILAE efforts for a global epilepsy research initiative in the EU.
AES continues to examine how we can best support all professionals in the epilepsy community to meet our shared mission of eradicating epilepsy and its consequences. Meeting the diverse needs across all areas with the best offerings possible is our greatest challenge and opportunity.
AES recently updated our 2015-2020 strategic plan and will be develpoing a new strategic plan in fall 2019.
Officer Election Date: Elections take place in the fall each year and terms begin at the December Annual Meeting
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