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Navigating Neurofibromatosis: An Update for Providers and Families

11-17-2021


Objectives (Educational Content) :

1. Evaluate possible gaps and compare factors associated with parent knowledge about NF1. 2. Identify ocular manifestations seen in NF. 3. Summarize changes in diagnostic criteria for NF. 4. Compare families experiences with NF1 versus NF2. 5. Identify the most common learning disorders associated with NF. 6. Summarize the most common neurologic complications of NF1. 7. Recognize cutaneous manifestations of NF. 8. Compare risk for breast cancer in women with NF1 compared to the general population.

Target Audience:

Health care professionals in inpatient, outpatient, and community settings.

Identified Gap:

Neurofibromatosis is one of the most common genetic disorders in pediatrics and the complications can cause significant issues for patients and families. Patients with neurofibromatosis are at risk for developmental and learning concerns, Headaches, high blood pressure, tumor development, vision issues, orthopedic concerns, and multiple other issues throughout their lifetime. For this reason, earlier recognition by primary care physicians as well as care within a focused multi-disciplinary NF clinic is essential for the surveillance and success of these patients. We developed the Neurofibromatosis conference to help spread awareness for physicians and advanced practice providers regarding the physical manifestations and recommended care guidelines in this patient population. Lastly, we also wanted to allow the conference to be open to families of patients with NF as well recognizing that improving health literacy, access to care, and knowledge of this disease would improve overall health outcomes in the patients and families as well.

Estimated Time to Complete the Educational Activity:

1 hour

Expiration Date for CME Credit:

01-16-2022

Method of Physician Participation in the Learning Process:

The learner will view the presentation, successfully complete a post-test and complete an activity evaluation.

Evaluation Methods:

All learners must successfully complete a post-test, as well as an activity evaluation, to claim CME credit.

Disclosure:

All presenter or planners have indicated that they have no relevant financial interest in any pharmaceutical or medical device company and that this activity was developed independent of commercial interest.

Accreditation Statement:

Children’s Hospital Medical Center of Akron is accredited by the Ohio State Medical Association to provide continuing medical education for physicians.

CHMCA designates this enduring material activity for a maximum of 5.5 AMA PRA Category 1 Credit TM. Physicians should only claim the credit commensurate with the extent of their participation in the activity.

Bibliography:

Mindy Aylward, RN, BSN, CPON

Outreach Educator, Akron Children’s Hospital

Jacqueline Branch, MD, FAAP

Developmental/Behavioral Pediatrician, Akron Children’s Hospital

Matthew Ginsberg, MD

Pediatric Neurologist, Akron Children’s Hospital

Kathleen Hassara, PsyD

Pediatric Neuropsychologist, Akron Children’s Hospital

Richard Hertle, MD, FAAO, FACS, FAAP

Director, Pediatric Ophthalmology, Dr. Boomer and Jill Burnstine Chair in Pediatric Ophthalmology; Pediatric Ophthalmologist; Akron Children’s Hospital

Pam Knight, MS

Clinical Program Director, Children’s Tumor Foundation

Jason Laufman, MD, FACMGG

Geneticist, Akron Children’s

William Lawhon, MD

Pediatric Ophthalmologist, Akron Childrens Hospital

Tiffany Leonard, MSN, APRN-CNP

Pediatric Nurse Practitioner, Akron Childrens Hospital

Nicholas Nguyen, MD

Director, Pediatric Dermatology, Pediatric Dermatologist; Akron Childrens Hospital

Emily Solem, MS, LCGC

Laboratory Genetic Counselor, Vanderbilt Clinical Genomics Laboratory

Kara Vitalone, MS, CGCC

Licensed, Certified Genetic Counselor. Akron Childrens Hospital

Erin Wright, MD

Director, Neuro-Oncology; Director, Shannon E. Wilkes Targeted Therapy Program; Co-Director, Neurofibromatosis Clinic, Akron Children’s Hospital

Children’s Hospital Medical Center of Akron is accredited by the Ohio State Medical Association to provide continuing medical education for physicians.

CHMCA designates this enduring material activity for a maximum of 5.5 AMA PRA Category 1 Credit TM. Physicians should only claim the credit commensurate with the extent of their participation in the activity.

 

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