Briefcase

From First Steps to Full Stride: A Lifelong Journey with Lennox-Gastaut Syndrome

Launch Date
08/30/2024
Credit Amount
0.75
Credit Expires
08/30/2025

Faculty

Elizabeth Thiele, MD, PhD
Moderator
Director, Pediatric Epilepsy Program
Massachusetts General Hospital
Professor of Neurology
Harvard Medical School
Boston, MA
Tracy Dixon-Salazar, PhD
Patient Advocate
Executive Director
Lennox-Gastaut Syndrome (LGS) Foundation
San Diego, CA
Tracy Dixon-Salazar, PhD
Patient Advocate

Dr. Dixon-Salazar is a neuroscientist, geneticist, and patient advocate. Her desire to get her PhD was inspired by her daughter who developed Lennox-Gastaut Syndrome (LGS) at the age of 2. She completed her PhD and postdoctoral work at UC, San Diego, where she studied the mechanisms of brain development and synaptic plasticity, identified genetic causes of rare disorders in children, and researched precision therapeutics in stem cell and animal models of pediatric disease. During her research tenure, and after 16 years of watching daily, unrelenting seizures in her child, she uncovered the driver of her daughter’s illness and identified a novel precision therapy that improved her child’s life.

Dr. Dixon-Salazar left academia after 15 years in the lab with a drive to decrease the amount of time it would take for patients to benefit from lab discoveries in epilepsy precision medicine. She worked as Associate Research Director at CURE Epilepsy helping to move funding forward for novel translational research in genomic medicine for patients with severe forms of pediatric-onset epilepsy. She then transitioned to the Director of Research and Strategy at the Lennox-Gastaut Syndrome (LGS) Foundation where she worked directly with patients to access precision therapies and partnered with researchers, clinicians, regulators, policymakers, therapy developers, and other advocacy groups to build a sustainable precision medicine infrastructure for all patients with epilepsy. Currently, Dr. Dixon- Salazar serves as the Executive Director of the LGS Foundation, where the mission is to improve the lives of individuals impacted by LGS through advancing research, awareness, education, and family support

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Statement of Need Learning Objectives Financial Support Target Audience Credit Information Disclosure Declaration

Statement of Need

Developmental and epileptic encephalopathies (DEEs) make up a diverse range of conditions that generally present with epileptic seizures and electroencephalogram (EEG) abnormalities. DEEs significantly impact children and adults living with the condition, as well as their caregivers. Patients and caregivers are frequently burdened by challenges associated with diagnostic delay, missed diagnoses, disparities which present as barriers to timely treatment, and long-term caregiving. Further complicating diagnosis, Lennox-Gastaut Syndrome (LGS) may have variable presentations that change over time. To optimize care for patients with DEEs such as LGS, clinicians must utilize collaborative care practices that include long-term care discussions alongside the multidisciplinary care team. This care team may include DEEs/LGS experts, pediatricians, primary care practitioners or internists, nurses, and other health care professionals.

In this CMEO “BriefCase,” expert faculty will walk learners through a real-world case and review unmet needs that persist for patients and caregivers. By identifying the impact of DEEs on patients and using real-world evidence to individualize treatment plans for patients with LGS, a collaborative and multidisciplinary approach to therapeutic decision-making can be realized.

Learning Objectives

At the conclusion of this activity, learners will be able to better:

  • Incorporate the latest clinical trial data and real-world evidence to individualize treatment plans for patients with LGS
  • Integrate a collaborative care approach that includes patient/caregiver QoL assessments, SDM, patient needs, and long-term care information as part of clinical decision-making for patients with LGS to improve outcomes

Financial Support

This program is supported by an independent medical education grant from Jazz Pharmaceuticals.

Target Audience

Primary: Neurologists, physician associates (PAs), and nurse practitioners (NPs)
Secondary: Pediatricians and primary care providers

Credit Information

Jointly Accredited Provider

In support of improving patient care, CME Outfitters, LLC, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team.

Physicians (ACCME) 0.75

CME Outfitters, LLC, designates this enduring material for a maximum of 0.75 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Pharmacists (ACPE) 0.75

This application-based activity is approved for 0.75 contact hours (0.075 CEUs) of continuing pharmacy credit (JA0007185-0000-24-050-H01-P).

Nurses (ANCC) 0.75

This activity is designated for 0.75 contact hours.

California Residents: This continuing nursing education activity was approved by the California Board of Registered Nursing. CME Outfitters, LLC’s provider number is CEP15510.

Interprofessional (IPCE) 0.75

This activity was planned by and for the healthcare team, and learners will receive 0.75 Interprofessional Continuing Education Credit for learning and change.

Physician Assistants (AAPA): 0.75

CME Outfitters, LLC, has been authorized by the American Academy of PAs (AAPA) to award AAPA Category 1 CME credit for activities planned in accordance with AAPA CME Criteria. This activity is designated for 0.75 AAPA Category 1 CME credits. Approval is valid until 08/30/2025. PAs should only claim credit commensurate with the extent of their participation.

ABIM MOC 0.75

Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to 0.75 MOC points in the American Board of Internal Medicine’s (ABIM) Maintenance of Certification (MOC) program. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit.

MIPS Improvement Activity

Completion of this accredited CME activity meets the expectations of an Accredited Safety or Quality Improvement Program (IA_PSPA_28) for the Merit-based Incentive Payment Program (MIPS). Clinicians should submit their improvement activities by attestation via the CMS Quality Payment Program website.

Royal College MOC

Through an agreement between the Accreditation Council for Continuing Medical Education and the Royal College of Physicians and Surgeons of Canada, medical practitioners participating in the Royal College MOC Program may record completion of accredited activities registered under the ACCME’s “CME in Support of MOC” program in Section 3 of the Royal College’s MOC Program.

Disclosure Declaration

Dr. Thiele reports the following financial relationships:

Advisory Board and Consultant: Aditum Bio; Azurity; Biocodex; Jazz Pharmaceuticals, Inc.; LivaNova; Nobelpharma; Stoke Therapeutics; Takeda; and UCB Pharma

Grants and Research Support: Biocodex; Jazz Pharmaceuticals, Inc.; and UCB Pharma

Dr. Dixon-Salazar reports no financial relationships to disclose.

The following individuals have no financial relationships to disclose: 

Jeffrey Helfand, DO (Peer Reviewer)
Albert Eubanks, Jr., RN (Peer Reviewer)
Evan Luberger (Planning Committee)
Erin Spencer, PharmD (Planning Committee)
Tracy Dixon-Salazar (Planning Committee)
Scott J. Hershman, MD, FACEHP, CHCP (Planning Committee)
Sandra Caballero, PharmD (Planning Committee)
Sharon Tordoff (Planning Committee)

Questions about this activity?

Call us at 877.CME.PROS (877.263.7767).

BC-126-083024-43

From First Steps to Full Stride: A Lifelong Journey with Lennox-Gastaut Syndrome
Event Date: 08/30/2024
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