Comprehensive, Coordinated Care for Neurofibromatosis
Patients with neurofibromatosis (NF) receive exceptional, comprehensive care at Cincinnati Children’s. The NF Program is led by oncologists and geneticists who work closely with neurologists, orthopedists and other specialists to provide coordinated, expert diagnosis and treatment.
Our program, one of the largest in the nation, serves as a resource to patients and families affected by the different types of NF through comprehensive diagnosis, treatment and research for these conditions.
Established in 1986, our program includes pediatric and young adult NF clinics, and we follow a comprehensive care model, performing appropriate surveillance evaluations and providing treatment when needed. Our program evaluates and manages over 500 patients per year with with neurofibromatosis 1 (NF1), segmental NF, neurofibromatosis 2 related schwannomatosis (NF2-SWN), and other types of schwannomatosis.
Recognized for Excellence in NF Care and Research
Our program was one of the first 20 programs chosen by the Children’s Tumor Foundation (CTF) to be part of the national NF Clinic Network, and was one of the initial nine centers chosen to be part of the NF Clinical Trials Consortium.
Our multidisciplinary center has expertise in all areas of NF care, with special emphasis on:
- Treatment of brain tumors, plexiform neurofibromas, malignant peripheral nerve sheath tumors (MPNSTs) and cancers
- Optic pathway gliomas and other gliomas associated with NF1
- Orthopedic management of scoliosis and tibial dysplasia (abnormality of bone formation in the lower leg)
- Schwannomatosis
- Learning disabilities and attention deficit hyperactivity disorder (ADHD)
- Medical and surgical management of vestibular schwannomas (tumors on hearing nerve) in NF2-SWN
- Screening for NF complications
- Pain and overall medical management of NF
Leadership in research is an essential component of our commitment to patients and families. Our team is dedicated to finding a cure through laboratory and clinical research. Cincinnati Children’s physicians and researchers play an active role in many national and international research studies as well as develop their own innovative protocols. This research provides our patients with early access to new therapies, sometimes years before they become widely available.
Cincinnati Children’s is one of only a small number of hospitals in the country that is part of the Children’s Oncology Group Phase I Consortium and the Neurofibromatosis Clinical Research Consortium. Many of our physicians serve in leadership positions for these and other pediatric cancer organizations, further strengthening our link to the latest clinical research opportunities.
Patients who have a family history of NF1 are not at increased risk for NF2 and vice versa. A clinic specifically for adults with NF and complex medical issues is held once monthly at the Hoxworth Building at UC Health. UC Health specialists are available for consultation in various specialties as needed.
Comprehensive, Multidisciplinary Team Approach
Leading our team are oncologists and genetic specialists who have extensive experience caring for NF patients and conducting clinical research. Members of the team include physicians specializing in:
- Audiology
- Ear, Nose and Throat (ENT) specialists
- Endocrinology
- Genetics
- Neuro-otology
- Neurology
- Neuropsychology
- Neuroradiology
- Neurosurgery
- Nutrition
- Occupational Therapy
- Oncologic Surgery
- Oncology and neuro-oncology
- Ophthalmology
- Orthopaedics
- Pain management
- Physical Medicine and Rehabilitation
- Physical Therapy
- Plastic Surgery
- Radiation Oncology
