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This activity is provided by an independent medical education grant from SpringWorks Therapeutics, Inc.

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    Faculty & Disclosures
    Dr AeRang Kim

    Children's National Hospital, Washington, DC, USA

    Dr AeRang Kim is a professor of paediatrics with tenure and the director of clinical research in the Division of Oncology and Solid Tumors attending at Children’s National Hospital in Washington, DC. read more

    Dr Kim’s research focuses on novel therapeutics for paediatric solid tumours, sarcomas and NF1-associated tumours, in particular malignant peripheral nerve sheath tumours (MPNST).

    Dr Kim serves as the MPNST disease committee chair for the Department of Defense Clinical Trials Consortium. She is the co-director of the Focused Ultrasound Foundation Center of Excellence at the Children’s National Hospital. With collaborators and federal funding support, Dr AeRang Kim has been able to develop and lead early-phase trials of novel combination therapeutics for paediatric patients with solid tumours, including sarcoma. She also serves as the institutional principal investigator at Children’s National Hospital for the Children’s Oncology Group, Pediatric Early Phase Clinical Trials Network with the major goal of conducting early-phase trials in children with cancer to identify and develop new agents for children and adolescents.

    Dr AeRang Kim has no financial interests/relationships or affiliations to disclose in relation to this activity.
    Dr Rebecca Brown

    University of Alabama School of Medicine, Birmingham, AL, USA

    Dr Rebecca Brown, MD, PhD is the director of the neurofibromatosis programme at the University of Alabama at Birmingham (UAB). read more

    Dr Brown is a board-certified neuro-oncologist and neurologist who specializes in neurofibromatosis (NF) and schwannomatosis (SWN; including NF2-related schwannomatosis), and related genetic nervous system tumour conditions. She earned her PhD from the Institute for Neuroscience at University of Texas (UT), Austin in 2007 studying the multi-generational effects of endocrine disrupting pollutants on female health. She subsequently completed a post-doctoral fellowship at the Center for Strategic and Innovative Technologies at UT, Austin, investigating the effects of sleep deprivation on cognition and physical performance. Dr Brown completed her MD at UT Southwestern in Dallas, TX, in 2013, where she studied NF1. She subsequently completed a neurology residency at Mount Sinai and a neuro-oncology fellowship at Memorial Sloan Kettering Cancer Center, specializing in NF1. She developed and served as the director of the NF and SWN clinic at Mount Sinai before being recruited to UAB. Dr Brown’s primary research interest is the development of novel pharmacotherapies for NF and SWN-related tumours.

    Dr Rebecca Brown discloses: Independent contractor fees from Pasithea, Inc. Advisory Board or panel fees from Neurovigil. Consultancy fees from Guidepoint.
    Dr Kaleb Yohay

    NYU Langone Health, New York, NY, USA

    Dr Kaleb Yohay, MD, is professor of neurology and paediatrics (clinical) at New York University (NYU) and director of the Division of Child Neurology and the Comprehensive Neurofibromatosis Center, which is recognized as recognized as one of the nation’s foremost for neurofibromatosis. read more

    Dr Yohay received his medical degree from the University of Vermont in 1993, and completed a residency in paediatrics and neurology at Johns Hopkins Hospital in Baltimore, MD. During his tenure at Johns Hopkins, he established and directed the Johns Hopkins Neurofibromatosis Center. He moved home to New York City in 2007, and joined the faculty at Weill Cornell Medical Center, and served as attending physician at New York Presbyterian and Memorial Sloan Kettering Cancer Center. Since 2014, Dr Yohay has been on the faculty at NYU Grossman School of Medicine.

    Dr Yohay’s clinical practice is exclusively focused on treating individuals with NF1, NF2, and schwannomatosis. He is keenly invested in the development of best practice for the screening, treatment, and provision of age-appropriate guidance for those affected by neurofibromatosis. Dr Yohay has dedicated his career to pioneering new treatments for neuro-oncological and neuro-genetic conditions. This includes spearheading a gene therapy trial aimed at treating late infantile neuronal ceroid lipofuscinosis, innovating drug delivery techniques for pontine glioma, and leading clinical trials focused on neurofibromatosis. He is currently involved in national and international clinical trial consortia for NF1, NF2 and schwannomatosis. He serves as the chair of the programmatic panel for the Department of Defense Neurofibromatosis Research Program. Beyond his research interests, Dr Yohay is committed to the development and education of future NF-focused clinicians.

    Dr Kaleb Yohay discloses: Advisory board or panel fees from Alexion. Stock/shareholder (self-managed) with Infixion Bioscience.
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    Tutorial

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    Poll

    What is the main unmet need in NF1 transition of care from childhood to adulthood?

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    Guidance on roles and responsibilities during transition
       
    Communication/coordination between paediatric and adult care teams
       
    Patient-centered resources to help young adults with NF1
       
    Training to recognize disease-related complications
       

    Tutorial

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    Poll

    When prescribing MEK inhibitors to an adult patient, which aspect do you prioritize?

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    Explaining the rationale for treatment with them
       
    Explaining the risk: benefit profile and how risks will be mitigated
       
    Understanding patient concerns about impact on quality of life
       
    Establishing screening protocols for early identification of side effects
       

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    Poll

    What is important for you when selecting a treatment approach for patients with PNs?

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    Symptom severity/functional impairment caused by the PNs
       
    Age and health of patient, including potential for disease progression
       
    Availability/appropriateness of targeted therapies
       
    Surgical feasibility and risk of complications from resection
       
     
    Expert Interviews
    Neurological Oncology, Neurosurgery, Paediatric Neurology, Rare Diseases CE/CME accredited

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    Management of neurofibromatosis: Optimizing treatment and care from childhood to adult life

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    Dr AeRang Kim is a professor of paediatrics with tenure and the director of clinical research in the Division of Oncology and Solid Tumors attending at the Children’s National Hospital in Washington, DC. read more

    Dr Kim’s research focuses on novel therapeutics for paediatric solid tumours, sarcomas and NF1-associated tumours, in particular malignant peripheral nerve sheath tumours (MPNST).

    Dr Kim serves as the MPNST disease committee chair for the Department of Defense Clinical Trials Consortium. She is the co-director of the Focused Ultrasound Foundation Center of Excellence at the Children’s National Hospital. With collaborators and federal funding support, Dr AeRang Kim has been able to develop and lead early-phase trials of novel combination therapeutics for paediatric patients with solid tumours, including sarcoma. She also serves as the institutional principal investigator at the Children’s National Hospital for the Children’s Oncology Group, Pediatric Early Phase Clinical Trials Network with the major goal of conducting early-phase trials in children with cancer to identify and develop new agents for children and adolescents.

    Dr AeRang Kim has no financial interests/relationships or affiliations to disclose in relation to this activity.

    Take CE/CME Test

    Dr Rebecca Brown, MD, PhD is the director of the neurofibromatosis programme at the University of Alabama at Birmingham (UAB). read more

    Dr Brown is a board-certified neuro-oncologist and neurologist who specializes in neurofibromatosis (NF) and schwannomatosis (SWN; including NF2-related schwannomatosis), and related genetic nervous system tumour conditions. She earned her PhD from the Institute for Neuroscience at University of Texas (UT), Austin in 2007 studying the multi-generational effects of endocrine disrupting pollutants on female health. She subsequently completed a post-doctoral fellowship at the Center for Strategic and Innovative Technologies at UT, Austin, investigating the effects of sleep deprivation on cognition and physical performance. Dr Brown completed her MD at UT Southwestern in Dallas, TX, in 2013, where she studied NF1. She subsequently completed a neurology residency at Mount Sinai and a neuro-oncology fellowship at Memorial Sloan Kettering Cancer Center, specializing in NF1. She developed and served as the director of the NF and SWN clinic at Mount Sinai before being recruited to UAB. Dr Brown’s primary research interest is the development of novel pharmacotherapies for NF and SWN-related tumours.

    Dr Rebecca Brown discloses: Independent contractor fees from Pasithea, Inc. Advisory Board or panel fees from Neurovigil. Consultancy fees from Guidepoint.

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    Dr Kaleb Yohay, MD, is professor of neurology and paediatrics (clinical) at New York University (NYU) and director of the Division of Child Neurology and the Comprehensive Neurofibromatosis Center, which is recognized as recognized as one of the nation’s foremost for neurofibromatosis. read more

    Dr Yohay received his medical degree from the University of Vermont in 1993, and completed a residency in paediatrics and neurology at Johns Hopkins Hospital in Baltimore, MD. During his tenure at Johns Hopkins, he established and directed the Johns Hopkins Neurofibromatosis Center. He moved home to New York City in 2007, and joined the faculty at Weill Cornell Medical Center, and served as attending physician at New York Presbyterian and Memorial Sloan Kettering Cancer Center. Since 2014, Dr Yohay has been on the faculty at NYU Grossman School of Medicine.

    Dr Yohay’s clinical practice is exclusively focused on treating individuals with NF1, NF2, and schwannomatosis. He is keenly invested in the development of best practice for the screening, treatment, and provision of age-appropriate guidance for those affected by neurofibromatosis. Dr Yohay has dedicated his career to pioneering new treatments for neuro-oncological and neuro-genetic conditions. This includes spearheading a gene therapy trial aimed at treating late infantile neuronal ceroid lipofuscinosis, innovating drug delivery techniques for pontine glioma, and leading clinical trials focused on neurofibromatosis. He is currently involved in national and international clinical trial consortia for NF1, NF2 and schwannomatosis. He serves as the chair of the programmatic panel for the Department of Defense Neurofibromatosis Research Program. Beyond his research interests, Dr Yohay is committed to the development and education of future NF-focused clinicians.

    Dr Kaleb Yohay discloses: Advisory board or panel fees from Alexion. Stock/shareholder (self-managed) with Infixion Bioscience.

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    Learning Objectives

    After watching this activity, participants should be better able to:

    • Formulate strategies to maximize outcomes and quality of life for patients with neurofibromatosis type 1 across all stages of life
    • Apply evidence-based practice to the management of neurofibromatosis type 1 and the treatment of plexiform neurofibromas in children and adults
    • Plan a coordinated transition from paediatric to adult healthcare for patients with neurofibromatosis type 1
    Overview

    Three experts provide insights into the optimal management of neurofibromatosis type 1 (NF1) in paediatric and adult patients, with a focus on plexiform neurofibromas. Strategies for ensuring the smooth transitioning of paediatric patients into the adult care system are also considered. read more

    Target Audience

    Paediatric and adult oncologists, including neuro-oncologists, neurologists and neurosurgeons involved in the management of NF1 at any stage from childhood to adult life.

    USF Accreditation

    Disclosures

    USF Health adheres to the Standards for Integrity and Independence in Accredited Continuing Education. All individuals in a position to influence content have disclosed to USF Health any financial relationship with an ineligible organization. USF Health has reviewed and mitigated all relevant financial relationships related to the content of the activity. The relevant relationships are listed below. All individuals not listed have no relevant financial relationships.

    Faculty

    Dr AeRang Kim has no financial interests/relationships or affiliations to disclose in relation to this activity.

    Dr Rebecca Brown discloses: Independent contractor fees from Pasithea, Inc. Advisory Board or panel fees from Neurovigil. Consultancy fees from Guidepoint.

    Dr Kaleb Yohay discloses: Advisory board or panel fees from Alexion. Stock/shareholder (self-managed) with Infixion Bioscience.

    Content reviewer

    Danielle Walker, DNP, APRN, AGNP-C, nurse reviewer and planner, has no financial interests/relationships or affiliations in relation to this activity.

    Touch Medical Contributors

    Christina Mackins-Crabtree has no financial interests/relationships or affiliations in relation to this activity.

    USF Health Office of Continuing Professional Development and touchIME staff have no financial interests/relationships or affiliations in relation to this activity.

    Requirements for Successful Completion

    In order to receive credit for this activity, participants must review the content and complete the post-test and evaluation form. Statements of credit are awarded upon successful completion of the post-test and evaluation form.

    If you have questions regarding credit please contact cpdsupport@usf.edu 

    Accreditations

    Physicians

    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 a joint providership of USF Health and touchIME. USF Health is accredited by the ACCME to provide continuing medical education for physicians.

    USF Health designates this enduring material for a maximum of 0.75 AMA PRA Category 1 CreditsTM.  Physicians should claim only the credit commensurate with the extent of their participation in the activity.

    Advanced Practice Providers

    Physician Assistants may claim a maximum of 0.75 Category 1 credits for completing this activity. NCCPA accepts AMA PRA Category 1 CreditTM from organizations accredited by ACCME or a recognized state medical society.

    The AANPCP accepts certificates of participation for educational activities approved for AMA PRA Category 1 CreditTM by ACCME-accredited providers. APRNs who participate will receive a certificate of completion commensurate with the extent of their participation.

    Nurses

    USF Health is accredited as a provider of nursing continuing professional development by the American Nurses Credentialing Center’s Commission on Accreditation.

    A maximum of 0.75 contact hour may be earned by learners who successfully complete this  continuing professional development activity. USF Health, the accredited provider, acknowledges touchIME as the joint provider in the planning and execution of this CNE activity.

    Date of original release: 7 January 2025. Date credits expire: 7 January 2028.

    If you have any questions regarding credit, please contact cpdsupport@usf.edu

    This activity is CE/CME accredited

    To obtain the CE/CME credit(s) from this activity, please complete this post-activity test.

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    Topics covered in this activity

    Neurological Oncology / Neurosurgery / Paediatric Neurology / Rare Diseases
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    This activity is funded by:

    An independent medical education grant from SpringWorks Therapeutics, Inc.
    This activity is jointly provided by USF Health and touchIME.

    The information provided by this CME activity is for continuing education purposes only and is not meant to substitute for the independent medical/clinical judgement of a healthcare provider relative to diagnostic and treatment options of a specific patient’s medical condition.

    USF is an Equal Opportunity / Affirmative Action / Equal Access Institution.

    USF Health is accredited by the Accreditation Council for Continuing Medical Education, the American Nurses Credentialing Center and the Accreditation Council for Pharmacy Education to provide continuing education to healthcare professionals. As an accredited provider, USF Health is required to disclose personal information to relevant accredited bodies that certify CME to process credits/contact hours, comply with reporting requirements, and for internal recordkeeping and regulatory purposes. USF Health does not share or sell any individual’s contact information or unique identifiers to any commercial supporter, advertiser, or third party without the specific permission of the individual.

    Unapproved products or unapproved uses of approved products may be discussed by the faculty; these situations may reflect the approval status in one or more jurisdictions. The presenting faculty have been advised by touchIME and USF Health to ensure that they disclose any such references made to unlabelled or unapproved use. No endorsement by touchIME or USF Health of any unapproved products or unapproved uses is either made or implied by mention of these products or uses in touchIME or USF Health activities. touchIME and USF Health accept no responsibility for errors or omissions.

    This content is intended for healthcare professionals outside of the UK only.

    Date of original release: 7 January 2025.

    Date credits expire: 7 January 2028.

    Claim Credit
    touchEXPERT FOCUS
    Management of neurofibromatosis: Optimizing treatment and care from childhood to adult life
    0.75 CE/CME credit
    Question 1/5
    What is an optimal clinical care model for managing paediatric patients with NF1? An NF specialist with…

    GP, general practitioner; NF, neurofibromatosis; NF1, NF-type 1.

    NF1 is a complex genetic disorder with a wide range of manifestations. Management of NF1 therefore requires a multidisciplinary approach involving various medical specialties, ideally led by an NF-specialist to ensure that the diverse aspects of the patient’s care are coordinated effectively.

    Abbreviations

    NF, neurofibromatosis; NF1, NF-type 1.

    Reference

    Lalvani S, Brown RM. J Multidiscip Healthc. 2024;17:1803–17.

    Question 2/5
    Based on clinical experience to date, which of the following best describes a key difference between mirdametinib and selumetinib for the treatment of PNs in patients with NF1?

    BID, twice daily; MEK, mitogen-activitated protein kinase; mTOR, mammalian target of rapamycin; NF1, neurofibromatosis type 1; PN, plexiform neurofibroma.

    MEK inhibitors provide a much-needed therapeutic avenue for patients with NF1 and unresectable PNs, offering both tumour reduction and symptom relief.1 Selumetinib is the first FDA-approved drug for the treatment of symptomatic, inoperable PNs, but only in paediatric patients ≥2 years with NF1.2 The recommended dosing is 25 mg/m2,  taken orally BID on an empty stomach.3

    Mirdametinib was granted priority review status by the FDA in August 2024 for use in adult and paediatric patients with NF1-associated symptomatic inoperable PN, based on a phase IIb clinical trial.4 It was administered as a capsule or dispersible tablet (2 mg/m2 BID, max 4 mg BID) without regard to food in 3 week on/1 week off, 28-day cycles.5

    Abbreviations

    BID, twice daily; FDA, US Food and Drug Administration; MEK, mitogen-activated protein kinase; NF1, neurofibromatosis type 1; PN, plexiform neurofibroma.

    References

    1. Brown R. Curr Oncol Rep. 2023;25:1409–17.
    2. FDA. FDA approves selumetinib for neurofibromatosis type 1 with symptomatic, inoperable plexiform neurofibromas. Available at: https://bit.ly/4eMPiXe (accessed 3 January 2025).
    3. FDA. Selumetinib. PI. Available at: https://bit.ly/48ZxsP9 (accessed 3 January 2025).
    4. OncLive. FDA Grants Priority Review to Mirdametinib for NF1-Associated Plexiform Neurofibromas. Available at: https://bit.ly/3Z1bO8G (accessed 3 January 2025).
    5. Moertel CL, et al. J Clin Oncol. 2024;42(Suppl. 16):3016.
    Question 3/5
    You are developing a monitoring schedule for an eight year-old who is starting treatment with a MEK inhibitor. You want to track reduction in PN size over time. What frequency of MRI scanning would you order for the child following a baseline scan?

    MEK, mitogen-activated protein kinase; MRI, magnetic resonance imaging; PN, plexiform neurofibroma.

    MRI with volumetric analysis is recommended to sensitively and reproducibly evaluate changes in tumour size.1 Due to the complex shape, large size, and slow growth of PN, long time periods are required to detect measurable change.1 It is recommended that restaging take place every 3–4 months for the first year on trial/treatment and subsequently every 6 months.1,2

    Abbreviations

    MRI, magnetic resonance imaging; PN, plexiform neurofibroma.

    References

    1. Dombi E, et al. Neurology. 2013;81(Suppl. 1):S33–40.
    2. Klesse LJ, et al. Oncologist. 2020;25:e1107–16.
    Question 4/5
    Following surgery to remove a progressive, resectable PN, causing cervical spinal cord compression, you meet with your tumour board to discuss whether or not your patient requires further intervention for PNs. Which of the following patient scenarios would most likely lead you to prescribe treatment with a MEK inhibitor?

    MEK, mitogen-activated protein kinase; PN, plexiform neurofibroma.

    Generally, surgery remains the treatment of choice if the PN can readily be resected without significant morbidity. Treatment with a MEK inhibitor is indicated in patients with inoperable, symptomatic NF1-PN; there are data to suggest that treatment of patients with inoperable PN, which are not currently causing clinically significant morbidity but deemed at risk for developing serious PN-related complications, may be effective in preventing PN growth and PN-related morbidity. Age is another key consideration in clinical decision making. Younger patients appear to be more likely to benefit from early initiation of a MEK inhibitor. Rapidly growing PNs tend to be observed in younger children (i.e., aged ≤5 years), and progressive PN (those that grow by ≥20% per year) are unusual after adolescence.

    Abbreviations

    MEK, mitogen-activated protein kinase; PN, plexiform neurofibroma.

    Reference

    Armstrong AE, et al. BMC Cancer. 2023;23:553.

    Question 5/5
    From a paediatric care perspective, what approach would you ideally take to optimize a child’s transition to adult care for their NF1?

    NF1, neurofibromatosis type 1.

    Healthcare transition is defined as the purposeful, planned movement of adolescents and young adults from child-centred care to an adult-oriented care system. As part of this process, it is recommended that paediatric providers develop relationships with adult providers and be willing to serve as a continued resource should it be needed. A “warm handoff” between providers either by phone, electronic message, or joint telehealth visit, are all ways to facilitate this transfer. 

    Reference

    Radtke HB, et al. Pediatric Health Med Ther. 2023;14:19–32.

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    This activity is funded by:

    An independent medical education grant from SpringWorks Therapeutics, Inc.
    This activity is jointly provided by USF Health and touchIME.

    The information provided by this CME activity is for continuing education purposes only and is not meant to substitute for the independent medical/clinical judgement of a healthcare provider relative to diagnostic and treatment options of a specific patient’s medical condition.

    USF is an Equal Opportunity / Affirmative Action / Equal Access Institution.

    USF Health is accredited by the Accreditation Council for Continuing Medical Education, the American Nurses Credentialing Center and the Accreditation Council for Pharmacy Education to provide continuing education to healthcare professionals. As an accredited provider, USF Health is required to disclose personal information to relevant accredited bodies that certify CME to process credits/contact hours, comply with reporting requirements, and for internal recordkeeping and regulatory purposes. USF Health does not share or sell any individual’s contact information or unique identifiers to any commercial supporter, advertiser, or third party without the specific permission of the individual.

    Unapproved products or unapproved uses of approved products may be discussed by the faculty; these situations may reflect the approval status in one or more jurisdictions. The presenting faculty have been advised by touchIME and USF Health to ensure that they disclose any such references made to unlabelled or unapproved use. No endorsement by touchIME or USF Health of any unapproved products or unapproved uses is either made or implied by mention of these products or uses in touchIME or USF Health activities. touchIME and USF Health accept no responsibility for errors or omissions.

    This content is intended for healthcare professionals outside of the UK only.

    Date of original release: 7 January 2025.

    Date credits expire: 7 January 2028.

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