Medical Surveillance and Screening of Adults with Neurofibromatosis Type 1

This presentation serves as a brief overview of the pathophysiology of Neurofibromatosis type 1, a common genetic disorder associated with neurocutaneous abnormalities, as well as its impact on the health of adult patients with this diagnosis. A review of the literature regarding the care of adult patients was conducted; the information is presented as a primer for providers caring for these patients in the community to guide management, screening, and surveillance and improve the delivery of care to this population.


Lindsay Lipinski, MD
Assistant Professor of Oncology
Department of Neurosurgery
Roswell Park Comprehensive Cancer Center
Buffalo, NY

Activity Planners

Ashley Snowden
Director, Physician and Corporate Relations
Roswell Park Comprehensive Cancer Center
Elm & Carlton Streets
Buffalo, NY

Samantha Gordon
CME Specialist
Baltimore, MD

Kathryn Schaefer, MSN, RN, CPHRM
Senior Manager, Accreditation and Compliance
East Lansing, MI

Statement of Need

Neurofibromatosis type 1 (NF1) is a relatively common genetic disorder with an incidence of approximately 1/2000-3000 and has a significant impact on the health of those with this diagnosis. While the diagnosis is generally established during childhood, most patients live a normal lifespan. Multidisciplinary specialty clinics are a comprehensive resource for patients, but they are limited in number and geography and many patients do not have the ability or resources to receive care at them. Additionally, most NF clinics focus on the care of pediatric patients. Because of these barriers, primary care physicians, advanced practice practitioners, and specialists in the community serve as the first and often only resource for these medically complex patients. Providers caring for adult patients in the community may have a limited understanding of the health implications of NF1 in adult population, as little consensus exists regarding management into adulthood and later life.

Target Audience

This activity is intended for primary care physicians, neurologists, neurosurgeons, and oncologists.

Learning Objectives

Upon completion, participants should be able to:

  • Understand the current care system for patients with NF1 and the potential barriers to accessing care in the adult population
  • Understand the basic pathophysiology of NF1, and recognize that the health issues that affect children with NF1 are often different from those that affect adults 
  • Become familiar with NF1-related conditions that affect adults, and the impact the diagnosis has on overall wellbeing
  • Understand the role of surveillance and screening in adult patients with NF1, and be able to identify when imaging or subspecialty referral is appropriate

Joint Providership 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 Med-IQ and Roswell Park. Med-IQ is accredited by the ACCME to provide continuing medical education for physicians.

Credit Designation

Med-IQ designates this enduring material for a maximum of .75 AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Nurse practitioners, physician assistants, and other healthcare professionals who successfully complete the activity will receive a Statement of Participation indicating the maximum credits available.

Instructions To Receive Credit

To receive credit, read the introductory CME material, watch the webcast, and complete the evaluation, attestation, and post-test, answering at least 70% of the post-test questions correctly.

Initial Release Date: 5/6/2020
Expiration Date: 5/5/2021

Estimated Time to Complete This Activity: 45 minutes


The information provided through this activity is for continuing education purposes only and is not meant to substitute for the independent medical judgment of a physician relative to diagnostic and treatment options of a specific patient’s medical condition.

Disclosure Policy

Med-IQ requires any person in a position to control the content of an educational activity to disclose all relevant financial relationships with any commercial interest. The ACCME defines “relevant financial relationships” as those in any amount occurring within the past 12 months, including those of a spouse/life partner, that could create a conflict of interest (COI). Individuals who refuse to disclose will not be permitted to contribute to this CME activity in any way. Med-IQ has policies in place that will identify and resolve COIs prior to this educational activity. Med-IQ also requires faculty to disclose discussions of investigational products or unlabeled/unapproved uses of drugs or devices regulated by the US Food and Drug Administration.


The content of this activity has been peer reviewed and has been approved for compliance. The faculty and contributors have indicated the following financial relationships, which have been resolved through an established COI resolution process, and have stated that these reported relationships will not have any impact on their ability to give an unbiased presentation.
Lindsay Lipinski, MD, has indicated no real or apparent conflicts.
The peer reviewers and activity planners have no financial relationships to disclose.

Statement Of Evidence-Based Content

Educational activities that assist physicians in carrying out their professional responsibilities more effectively and efficiently are consistent with the ACCME definition of continuing medical education (CME). As an ACCME-accredited provider of CME, it is the policy of Med-IQ to review and ensure that all the content and any recommendations, treatments, and manners of practicing medicine in CME activities are scientifically based, valid, and relevant to the practice of medicine. Med-IQ is responsible for validating the content of the CME activities it provides. Specifically, (1) all recommendations addressing the medical care of patients must be based on evidence that is scientifically sound and recognized as such within the profession; (2) all scientific research referred to, reported, or used in CME in support or justification of a patient care recommendation must conform to generally accepted standards of experimental design, data collection, and analysis.

Med-IQ is not liable for any decision made or action taken in reliance upon the information provided through this activity.

Contact Information

For CME questions or comments about this activity, please contact Med-IQ.
Call (toll-free) 866 858 7434 or email




May 6, 2020


May 5, 2021

Related Presenters

Lindsay Lipinski, MD, FAANS

Lindsay Lipinski, MD, FAANS

Assistant Professor of Oncology, Roswell Park Comprehensive Cancer Center

Supporting Documents