Vanderbilt joins national neurofibromatosis networkNov. 9, 2017, 10:15 AM
The Vanderbilt-Ingram Cancer Center Neurofibromatosis (NF) Clinic has joined the Children’s Tumor Foundation NF Clinic Network.
Established in 2007, the network consists of 50 clinics dedicated to improving care and advancing research for people diagnosed with NF, a group of diseases that is often inherited and cause benign tumors to grow on nerves throughout the body.
NF also predisposes people to cancerous tumors and developmental, bone and cardiovascular disorders.
The most common form, NF1, is typically diagnosed in childhood, and continues to affect people throughout their lives. The Vanderbilt clinic treats both children and adults.
“With a lot of clinics, once an individual reached his or her mid-teens and was out of pediatric age range, they no longer had a clinic to go to,” said Paul Moots, M.D., professor of Neurology and chief of Neuro-oncology.
“In fact, there are a lot of clinics around the country that are still just pediatric. We cover both adults and pediatric and overlap a fair amount. That provides a nice transition for the teens who are finishing school and moving into the adult age range.”
The clinic saw 177 patients last year, with those evenly divided between adults and children, Moots said.
NF is a rare disease, he said, noting “If you are in primary care, an internist or a family practitioner, you might see one patient in your whole practice.”
The clinic Moots launched at Vanderbilt in 2011 gave those doctors a place to refer patients.
He and Jennifer Ann Brault, M.D., a pediatric neurologist and geneticist and assistant professor of Clinical Pediatrics, attend in the clinic.
For children diagnosed with malignant tumors, they work with Debra Friedman, M.D., E. Bronson Ingram Professor of Pediatric Oncology, and her team to coordinate care.
As director of the Cancer Survivorship Clinic, Friedman has also served as an adviser to the NF Clinic.
“We are honored to have been selected as a member of the Children’s Tumor Foundation Neurofibromatosis Clinic Network,” Friedman said.
“This reflects the exceptional multispecialty care available at Vanderbilt for children and adults, which is essential for families affected by neurofibromatosis. We are the only such center in the state of Tennessee due to our unique ability to care for families with neurofibromatosis across the lifespan with family-centered care.”
The CTF Neurofibromatosis Clinic Network recognizes clinics that provide comprehensive medical care, foster patient education and encourage participation in clinical research trials.
Comprehensive care requires coordinating with other specialists, particularly neurosurgeons and otolaryngologists in the Skull Base Clinic, plastic surgeons, orthopaedic surgeons, pediatric ophthalmologists, developmental medicine specialists and many others according to the needs of specific patients, Moots said. Vanderbilt University Medical Center (VUMC) also partners with Vanderbilt University to conduct research.
Sheryl Rimrodt-Frierson, M.D. assistant professor of Pediatrics in Developmental Medicine, and Laura Cutting, Ph.D., Patricia and Rodes Hart Professor of Special Education, Psychology, Radiology and Radiological Sciences and Pediatrics, are conducting a study sponsored by the National Institutes of Health to determine the best methods for teaching children with NF type 1 to read.
About one-third of children with NF have learning disabilities, Moots said.
The disease is classified into three types, NF1, which affects one in 3,000 people; NF2, which affects about one in 25,000 people and is characterized by the development of tumors on nerves that carry sound and balance information from the inner ear to the brain; and schwannomatosis, which affects less than one in 40,000 people and is characterized by the development of tumors on the spinal cord and peripheral nerves.
NF2 and schwannomatosis mainly affect adults. The clinic at Vanderbilt also assists families with genetic counseling. Half of the people who develop NF1 or NF2 inherit it from a parent.