On Demand - Navigating Novel Terrain in Neurofibromatosis Type 1: An Interactive Road Map for the Oncology Nurse in the Era of Targeted Therapy

Designed and developed to provide a highly interactive and exhaustive overview of novel and emerging data, as well as establish a foundational context of NF1 disease state complexity, this activity will begin by identifying cardinal diagnostic signs, symptoms, and hallmark aspects of NF1 natural history and clinical presentation, and describing the genetic etiologies, genotype-phenotype correlations, and multi-system pathophysiologies that have historically made NF1-associated plexiform neurofibromas (PNs) so difficult to treat. Galvanized by a dynamic case-based approach, attendees will then receive detailed insights from key opinion leaders regarding the emergence of clinical trial data and recent FDA approvals in NF1, as well as a review of the novel horizons in PN and low-grade glioma (LGG) management that have accompanied the evolution of targeted medical therapies, most notably MEK inhibitors. Finally, top-level clinical experts will guide attendees through a case-driven exploration of the pivotal patient-facing role of the oncology nurse in the shifting NF1 treatment paradigm, and provide activity participants an opportunity to design practical interdisciplinary strategies for longitudinal NF1 patient assessment, toxicity monitoring, patient and family education, and establishment of a dedicated emotional support infrastructure.

Supported through an independent educational grant from AstraZeneca.

ONS Statement:
A presentation timeslot has been assigned to provide a Symposia supported by AstraZeneca during the Oncology Nursing Society’s (ONS) Congress Virtual Event. The Oncology Nursing Society's assignment of a presentation timeslot does not imply product endorsement.

Target Audience

This educational initiative is targeted to oncology nurses and nurse practitioners attending the Oncology Nursing Society’s (ONS) 46th Annual Congress in 2021.

Learning Objectives

  • Recognize cardinal diagnostic signs and symptoms of neurofibromatosis type 1 (NF1), and identify hallmark aspects of NF1 clinical presentation and progression.
  • Describe the genetic etiology, genotype-phenotype correlations, and multi-system pathophysiology of NF1, with a focus on the clinical gravity and historical intractability of plexiform neurofibromas.
  • Review completed and ongoing clinical trial data for MEK inhibitors and other novel targeted therapies, including recent FDA approvals, for management of NF1-associated plexiform neurofibromas and low-grade gliomas.
  • Evaluate the toxicity profiles of approved and investigational NF1 targeted therapy agents, with emphasis on MEK inhibitors, and develop strategies to anticipate, mitigate, and manage adverse events.
  • Using real-world perspectives, discuss the pivotal role of the oncology nurse on the interdisciplinary treatment team, and appraise practical approaches for employing longitudinal NF1 patient assessment, toxicity monitoring, patient and family education, and emotional support.

Additional Information

PDF icon Handout and References5.15 MB
Course summary
Available credit: 
  • 1.00 ANCC
  • 1.00 Participation
Course opens: 
Course expires: 

5 min
Welcome and Introductions/Pre-test

10 min
Where We’ve Been: NF1 Diagnosis, Natural History, & Clinical Presentation

15 min
Where We’re Going: An Application-Based Exploration of MEK Inhibitors for Plexiform Neurofibroma Management

20 min
How We Get There: The Paramount Placement of the Oncology Nurse in the NF1 Treatment Continuum

10 min
Interactive Conversation with the Experts: Audience Q&A/Post-test

Shannon Langmead, RN, MSN, CRNP, CNRN (Chair)
Clinic Coordinator, The Johns Hopkins Comprehensive Neurofibromatosis Center
Baltimore, Maryland



Shannon Langmead is an Adult Nurse Practitioner and Clinic Coordinator for The Johns Hopkins Comprehensive Neurofibromatosis Center. Shannon completed her undergraduate studies at Saint Francis University in Pennsylvania and Villa Julie College in Maryland where she received a BA in Spanish and BS in Nursing. She worked as a bedside nurse in Neurology and Neurosurgery in the Johns Hopkins Hospital for 8 years before completing her Master of Science Degree in Nursing at The Johns Hopkins University School of Nursing and joining the NF team. Shannon has also worked as Part-time Clinical Faculty for The Johns Hopkins University School of Nursing. She is a Certified Neuroscience Registered Nurse and is a Board Certified Adult Nurse Practitioner.  

Shannon evaluates and manages patients with NF1, NF2 and Schwannomatosis. Her special interests include pain management and developing social support networks for patients. She also volunteers with Brainy Camps at Camp New Friends hosted by Children’s National Medical Center and NF Mid-Atlantic.


Jaishri Blakeley, MD
Professor of Neurology, Oncology and Neurosurgery (Neuro-oncology)
Director, Johns Hopkins Comprehensive Neurofibromatosis Center
Director, United Counsel of Neurologic Subspecialties (UCNS) Neuro-Oncology Fellowship, Johns Hopkins
Baltimore, Maryland

Dr. Jaishri Blakeley is the Marjorie Bloomberg Tiven Professor of Neurofibromatosis in Neurology, Oncology and Neurosurgery, Director of the Johns Hopkins Comprehensive Neurofibromatosis Center, and the Neurofibromatosis Therapeutic Acceleration Program (NTAP). NTAP was founded in 2012 with the goal of dramatically shifting the landscape of clinical care for people with Neurofibromatosis Type 1 associated plexiform and cutaneous neurofibromas via the core tenants of: focus on therapeutics, foster collaboration, facilitate open and timely sharing of results, and streamline the research process. Dr. Blakeley’s research expertise is in the development of clinical trials for nervous system tumors and specifically, clinical-translational studies including tumor pharmacokinetic and pharmacodynamic investigations, imaging biomarkers and incorporation of patient focused, functional endpoints. Her research, mentorship and programmatic efforts are all in the service of improving outcomes for the patients for whom she is honored to provide care for as an active clinician in neuro-oncology.


Connie DiDomenico, PNP-BC
Neuro-Oncology Nurse Practitioner
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania


Connie DiDomenico is a graduate of the University of Pennsylvania School of Nursing, BSN 1994 and MSN 1999. Her career has been primarily in pediatric oncology. Connie practiced as an inpatient and outpatient nurse at the Children’s Hospital of Philadelphia (CHOP) for 3 years while she completed her nurse practitioner program in Acute Chronic Pediatrics. Oncology at CHOP offered her the opportunity for many roles as an advanced practice nurse including clinical nurse specialist and nurse practitioner. Connie currently practices in Neuro-Oncology and has done so for the past 12 years. Her professional interests include management of patients with retinoblastoma, Neuofibromatosis and clinical research.


In accordance with the Food and Drug Administration, the speakers have disclosed that there is the potential for discussions concerning off-label uses of a commercial product/device during this educational activity.

Any person who may contribute to the content of this continuing education activity must disclose relevant relationships (and any known relationships of their spouse/partner) with commercial interests whose products or services are discussed in educational presentations. A commercial interest is defined as any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on, patients. Relevant relationships include receiving from a commercial interest research grants, consultant fees, travel, other benefits, or having a self-managed equity interest in a company.

Disclosure of a relationship is not intended to suggest or condone any bias in any presentation but is made to provide participants with information that might be of potential importance to their evaluation of a presentation.

Shannon Langmead, RN, MSN, CRNP, CNRN–has disclosed that she is a consultant for the AstraZeneca Nurse Advisory Board.
Bryan C. Taylor, PharmD–has no relevant financial relationships to disclose in relation to the content of this activity.

Shannon Langmead, RN, MSN, CRNP, CNRN–has disclosed that she is a consultant for the AstraZeneca Nurse Advisory Board.
Jaishri Blakeley, MD–has disclosed that she is a consultant for Abbvie, Astellas, AstraZeneca, and Springworks. She receives grant/research support from Bristol Meyers Squib, GSK, and Sanofi.
Connie DiDomenico, PNP-BC–has no relevant financial relationships to disclose in relation to the content of this activity.

Tammi L. Skelton, MSN, CRNP, NP-C–has no relevant financial relationships to disclose in relation to the content of this activity.

In support of improving patient care, Creative Educational Concepts 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.


Nursing (ANCC)
This activity is designated for 1.0 contact hour.

ONCC/ILNA Certification Information
The program content has been reviewed by the Oncology Nursing Certification Corporation (ONCC) and is acceptable for recertification points. OCN®, AOCNP®, CBCN®, CPHON®, and BMTCN® nurses may apply 0.25 points in Diagnosis and Staging, Disease-Related Biology, Psychosocial, Scientific Basis for Practice, and Symptom Management categories; 0.5 points in Oncology Nursing Practice, Professional Practice, and Roles of the APN categories, and 1.0 point in the Treatment category.

Disclaimer: ONCC review is only for designating content to be used for recertification points and is not for CNE accreditation. CNE programs must be formally approved for contact hours by an acceptable accreditor/approver of nursing CE to be used for recertification by ONCC. If the CNE provider fails to obtain formal approval to award contact hours by an acceptable accrediting/approval body, no information related to ONCC recertification may be used in relation to the program.

Upon completion of a a post-test, evaluation, and credit request, statements of credit for nurses will be issued automatically.

Available Credit

  • 1.00 ANCC
  • 1.00 Participation
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