CME Presentations
Rett Syndrome
Presentations
Dialogues about Rett Syndrome: What Patients Wish Clinicians Knew to Enhance Diagnosis
Speakers: Carmen Luna, MPH, Clinical Network ManagerArthur Beisang, MD, Complex Care PediatricianTim Benke, MD, PhD, Professor of Pediatrics, Pharmacology, Neurology and Otolaryngology Duration: 60 minutes
Presented on: February 17, 2023
Speakers
Carmen Luna, MPH
Carmen Luna, MPH
Clinical Network Manager
Carmen Luna joined the International Rett Syndrome Foundation (IRSF) in 2021 to manage the newly formed Rett Syndrome Center of Excellence Network. Carmen is the Clinical Network Manager for the IRSF. She has over 10 years of research project management experience and worked at the Kaiser Permanente Colorado - Institute for Health Research prior to joining IRSF. As a mother of three, including a 6 year old daughter with Rett syndrome, Carmen is passionate about supporting clinics to facilitate and advance research to treat and cure Rett syndrome. She holds a Bachelor of Science degree from Miami University and a Master of Public Health degree from the University of Louisville.
Arthur Beisang, MD
Arthur Beisang, MD
Complex Care Pediatrician
Arthur (Art) Beisang, MD, has been a practicing pediatrician for 30 years. He has focused exclusively on Complex Care Pediatrics since moving to Gillette Children’s Specialty Health Care in 2006. Dr. Beisang was a founder of the Rett and Rett-Related Disorders Clinic at Gillette. He is currently the Clinic’s Co-Director and Co-director of the Aerodigestive Clinic. His clinical goal is to maintain the health of his neurologically complex patients, including managing all aspects of feeding, diagnosing distressing symptoms (including dysautonomia), and managing aspiration and drooling. Dr. Beisang has multiple publications with a focus on Rett syndrome and multiple patents on medical devices. He’s devoted his life to improving the lives of children diagnosed with a rare disease.
Tim Benke, MD, PhD
Tim Benke, MD, PhD
Professor of Pediatrics, Pharmacology, Neurology and Otolaryngology
Tim Benke, MD, PhD, is the Ponzio Family Chair in Neurology Research and Professor of Pediatrics, Pharmacology, Neurology and Otolaryngology at University of Colorado School of Medicine. He joined the University of Colorado and Children’s Hospital Colorado (CHCO) in 2002 where he is Research Director of the Neuroscience Institute. Dr. Benke initiated the multi-disciplinary Rett Clinic at CHCO, where he is the Medical Director. He leads the IFCR COE CDKL5 natural history initiative, is the site PI for the NIH-funded Natural History Study of Rett, CDKL5, and FOXG1, and participates in clinical trials in RTT and CDKL5. One of his research goals is to understand the natural history of CDKL5 Deficiency Disorder and find better treatments for this and other developmental encephalopathies.
CME Information
This activity is jointly provided by Global Education Group and PlatformQ Health Education, LLC, in collaboration with the National Organization for Rare Disorders, Inc. (NORD) and International Rett Syndrome Foundation.Dialogues about Rett Syndrome: What Patients Wish Clinicians Knew to Enhance Diagnosis
ACKNOWLEDGEMENT
This activity is supported by an educational grant from Acadia Pharmaceuticals Inc.DATE OF RELEASE/EXPIRATION
This activity was released on February 17, 2023 and is valid until February 17, 2024. Requests for credit must be made no later than February 17, 2024.TARGET AUDIENCE
The educational design of this activity addresses the needs of neurologists, pediatric neurologists, and neuromuscular specialists involved in the treatment of patients with Rett syndrome.STATEMENT OF NEED/PROGRAM OVERVIEW
Even after the onset of symptoms, a diagnosis of Rett syndrome is often delayed by 12 months or more. Improving outcomes for patients with Rett syndrome depends upon improving accurate and timely diagnoses and individualizing treatments based on each patient’s needs and comorbidities. As agents to treat the core symptoms of Rett syndrome are advancing in clinical trial development, with a promising agents expected to be approved by the US FDA in early 2022, early diagnosis is becoming of the utmost importance to ensure access to these breakthrough agents.
Join a panel of neurology and pediatric specialists, as well as a patient advocate, to explore ways to reduce the time to diagnosis by recognizing early signs of Rett syndrome, understanding the place of genetic testing, and asking questions to gauge patient/caregiver experiences. Panelists will discuss strategies to ensure patients and caregivers understand the available and emerging treatment options for Rett syndrome, the latest clinical findings, and the importance of multidisciplinary care. Clinicians will be prepared to facilitate access to breakthrough therapies and improve quality of life for their patients with Rett syndrome.EDUCATIONAL OBJECTIVES
After completing this activity, the participant should be better able to:
- Partner with caregivers and families to enhance recognition of the signs and symptoms of Rett syndrome early in its disease course
- Assess the therapeutic potential of new and emerging agents for the treatment of Rett syndrome, in addition to the standard of care
- Work with families and caregivers to define treatment plans as the needs of patients evolve
PHYSICIAN ACCREDITATION STATEMENT
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of Global Education Group (Global) and PlatformQ Health Education, LLC. Global is accredited by the ACCME to provide continuing medical education for physicians.PHYSICIAN CREDIT DESIGNATION
Global Education Group designates this enduring material for a maximum of 1.0 AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.ESTIMATED TIME TO COMPLETE
This activity should take approximately 60 minutes to complete.INSTRUCTIONS TO RECEIVE CREDIT
In order to receive credit for this activity, the participant must (1) read the target audience, learning objectives, and disclosure statements, (2) complete the educational activity online, and (3) complete the post-test and activity evaluation. To receive AMA PRA Category 1 Credits™, participants must receive a score of 70% on the post-test.HARDWARE/SOFTWARE REQUIREMENTS
Participants will need a computer with a recent version of Adobe Flash installed, as well as an internet connection sufficient for streaming media.FEE INFORMATION & REFUND/CANCELLATION POLICY
There is no fee for this educational activity.DISCLOSURES OF RELEVANT FINANCIAL RELATIONSHIPS
Global Education Group (Global) adheres to the policies and guidelines, including the Standards for Integrity and Independence in Accredited CE, set forth to providers by the Accreditation Council for Continuing Medical Education (ACCME) and all other professional organizations, as applicable, stating those activities where continuing education credits are awarded must be balanced, independent, objective, and scientifically rigorous. All persons in a position to control the content of an accredited continuing education program provided by Global are required to disclose all financial relationships with any ineligible company within the past 24 months to Global. All financial relationships reported are identified as relevant and mitigated by Global in accordance with the Standards for Integrity and Independence in Accredited CE in advance of delivery of the activity to learners. The content of this activity was vetted by Global to assure objectivity and that the activity is free of commercial bias.
All relevant financial relationships have been mitigated.
The faculty have the following relevant financial relationships with ineligible companies:
Name of Faculty or Presenter Reported Financial Relationship Timothy A. Benke, BS, MS, MD, PhD
Professor, Departments of Pediatrics, Pharmacology, Neurology and Otolaryngology
Ponzio Family Chair in Pediatric Neurology Research
Medical Director, Rett Clinic
Research Director, Neuroscience Institute
University of Colorado, School of Medicine
Children’s Hospital ColoradoConsulting Fee: AveXis/Novartis, Alcyone, GW Pharmaceuticals, Marinus, Neurogene, Ovid, Takeda, Taysha, Ultragenyx, and Zogenix/UCB
Contracted Research: Acadia Pharmaceuticals Inc., GW Pharmaceuticals, Marinus, and OvidArthur A. Beisang III, MD
Complex Care Pediatrician
Co-Director Rett and Rett Related Disorders Clinic
Co-Director Aerodigestive Clinic
Gillette Children’sConsulting Fee (e.g., Advisory Board): Acadia Pharmaceuticals Inc. Carmen Luna, MPH
Clinical Network Manager
Rett Syndrome Parent
International Rett Syndrome FoundationNothing to disclose
The planners and managers at Global Education Group and PlatformQ Health Education, LLC have no relevant financial relationships to disclose.
DISCLOSURE OF UNLABELED USE
This educational activity may contain discussion of published and/or investigational uses of agents that are not indicated by the FDA. Global Education Group (Global) and PlatformQ Health Education, LLC do not recommend the use of any agent outside of the labeled indications.
The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of any organization associated with this activity. Please refer to the official prescribing information for each product for discussion of approved indications, contraindications, and warnings.DISCLAIMER:
Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any procedures, medications, or other courses of diagnosis or treatment discussed in this activity should not be used by clinicians without evaluation of patient conditions and possible contraindications on dangers in use, review of any applicable manufacturer’s product information, and comparison with recommendations of other authorities.CONTACT INFORMATION
Accreditation Support:
For information about the accreditation of this program, please contact Global at 303-395-1782 or cme@globaleducationgroup.comTechnical Support:
For any technical issues or issues with your CME Certificate, please contact NeuroSeriesLive.com at 877-394-1306 or at Support@NeuroSeriesLive.com.
This activity is jointly provided by Global Education Group and PlatformQ Health Education, LLC, in collaboration with the National Organization for Rare Disorders, Inc. (NORD) and International Rett Syndrome Foundation.Rett Syndrome: Hope for Patients and Caregivers
ACKNOWLEDGEMENT
This activity is supported by an educational grant from Acadia Pharmaceuticals Inc.DATE OF RELEASE/EXPIRATION
This activity was released on August 18, 2022 and is valid until September 14, 2023. Requests for credit must be made no later than September 14, 2023.TARGET AUDIENCE
The educational design of this activity addresses the needs of neurologists, pediatric neurologists, and neuromuscular specialists involved in the treatment of patients with Rett syndrome.STATEMENT OF NEED/PROGRAM OVERVIEW
Rett syndrome is a rare, non-inherited neurodevelopmental disorder with no disease-specific therapies or cure. Despite this burden on patients and their caregivers, diagnosis is often delayed by 12 months or more after symptom onset. A call to action to clinicians for earlier diagnosis is urgently needed. Additionally, a variety of emerging therapies hold great promise for improving the treatment of Rett syndrome, and warrants education for clinicians to enhance awareness of new and effective treatment options to manage symptoms.
Join a panel of expert neurologists for an exploration of the urgent need for earlier diagnoses of Rett syndrome to ensure proper management. Panelists will review the stages of Rett syndrome, the criteria for diagnosis, the genetic mutations that cause the disease, and the place for genetic testing. Participating clinicians will recognize the available options to manage symptoms (gastrointestinal dysfunction, epilepsy, and physical and language deficits) and the promising therapies being investigated in clinical trials.EDUCATIONAL OBJECTIVES
After completing this activity, the participant should be better able to:
- Recognize signs and symptoms of Rett syndrome early in its disease course
- Discuss the place of genetic testing in the diagnosis of Rett syndrome
- Summarize the components of the symptomatic management of patients with Rett syndrome
- Review the therapeutic potential of agents being investigated for the treatment of patients with Rett syndrome
PHYSICIAN ACCREDITATION STATEMENT
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of Global Education Group (Global) and PlatformQ Health Education, LLC. Global is accredited by the ACCME to provide continuing medical education for physicians.PHYSICIAN CREDIT DESIGNATION
Global Education Group designates this enduring material for a maximum of 1.0 AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.ESTIMATED TIME TO COMPLETE
This activity should take approximately 60 minutes to complete.INSTRUCTIONS TO RECEIVE CREDIT
In order to receive credit for this activity, the participant must (1) read the target audience, learning objectives, and disclosure statements, (2) complete the educational activity online, and (3) complete the post-test and activity evaluation. To receive AMA PRA Category 1 Credits™, participants must receive a score of 70% on the post-test.HARDWARE/SOFTWARE REQUIREMENTS
Participants will need a computer with a recent version of Adobe Flash installed, as well as an internet connection sufficient for streaming media.FEE INFORMATION & REFUND/CANCELLATION POLICY
There is no fee for this educational activity.DISCLOSURE OF CONFLICTS OF INTEREST
Global Education Group (Global) adheres to the policies and guidelines, including the Standards for Integrity and Independence in Accredited CE, set forth to providers by the Accreditation Council for Continuing Medical Education (ACCME) and all other professional organizations, as applicable, stating those activities where continuing education credits are awarded must be balanced, independent, objective, and scientifically rigorous. All persons in a position to control the content of an accredited continuing education program provided by Global are required to disclose all financial relationships with any ineligible company within the past 24 months to Global. All financial relationships reported are identified as relevant and mitigated by Global in accordance with the Standards for Integrity and Independence in Accredited CE in advance of delivery of the activity to learners. The content of this activity was vetted by Global to assure objectivity and that the activity is free of commercial bias.
All relevant financial relationships have been mitigated.
The faculty have the following relevant financial relationships with ineligible companies:
Name of Faculty or Presenter Reported Financial Relationship Cary Fu, MD
Child Neurologist and Epileptologist
Medical Director, Vanderbilt Rett Syndrome Clinic
Vanderbilt University Medical Center
Department of PediatricsNothing to disclose David N. Lieberman, MD, PhD
Child Neurologist
Director, Comprehensive Rett Syndrome Clinic
Department of Neurology
Boston Children’s HospitalConsulting Fee: (e.g., Advisory Board): Acadia Pharmaceuticals, Neurogene, and Taysha Gene Therapies
Contracted Research: PI for clinical trials supported by Acadia Pharmaceuticals, Anavex Life Sciences, and GW Research Limited
Paige Nues
Director of Family Empowerment
International Rett Syndrome Foundation (IRSF)Nothing to disclose
The planners and managers have the following relevant financial relationships with ineligible companies:
Name of Planner or Manager Reported Financial Relationship Lindsay Borvansky Nothing to disclose Andrea Funk Nothing to disclose Liddy Knight Nothing to disclose Ashley Cann Nothing to disclose Carole Drexel, PhD Nothing to disclose Colleen Heffner Nothing to disclose Jaimee Harris-Gold Nothing to disclose Stephanie Puccio Nothing to disclose Samantha Brant – Caregiver Participant Nothing to disclose
DISCLOSURE OF UNLABELED USE
This educational activity may contain discussion of published and/or investigational uses of agents that are not indicated by the FDA. Global Education Group (Global) and PlatformQ Health Education, LLC do not recommend the use of any agent outside of the labeled indications.
The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of any organization associated with this activity. Please refer to the official prescribing information for each product for discussion of approved indications, contraindications, and warnings.DISCLAIMER:
Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any procedures, medications, or other courses of diagnosis or treatment discussed in this activity should not be used by clinicians without evaluation of patient conditions and possible contraindications on dangers in use, review of any applicable manufacturer’s product information, and comparison with recommendations of other authorities.CONTACT INFORMATION
Accreditation Support:
For information about the accreditation of this program, please contact Global at 303-395-1782 or cme@globaleducationgroup.comTechnical Support:
For any technical issues or issues with your CME Certificate, please contact NeuroSeriesLive.com at 877-394-1306 or at Support@NeuroSeriesLive.com.
