Neurofibromatosis Center

  • Cincinnati Neurofibromatosis Center

    The Cincinnati Neurofibromatosis Center serves as a resource to patients and families affected by the different types of neurofibromatosis (NF) by providing comprehensive diagnosis, treatment and research for these conditions.

    Established in 1986, the NF Center includes a pediatric NF Clinic, Adult NF Clinic, NF / Neurology Clinic, NF Orthopedics and a Neuro-Oncology Clinic for patients with central nervous system and plexiform tumors.  Since its inception, the NF Center has evaluated and managed more than 800 patients with NF1, NF2, segmental NF and schwannomatosis.  The Cincinnati NF Center was also one of the first 20 programs chosen by the Children’s Tumor Foundation (CTF) to be part of the national NF Clinic Network, and is one of the nine centers chosen to be part of the NF Clinical Consortium.

    The NF Center’s mission is to provide excellent patient care and to participate in NF science and research. Our multidisciplinary center has expertise in all areas of NF care, with special emphasis on:

    • Treatment of brain tumors, plexiform neurofibromas and cancers
    • Orthopedic management of scoliosis and tibial dysplasia (abnormality of bone formation in the lower leg)
    • Learning disabilities and ADHD
    • Surgical management of vestibular schwannomas (tumors on hearing nerve) in NF2

    We also supply referrals to additional specialists as needed.

    Patients may be seen at the Burnet or Liberty campuses.

    What Is Neurofibromatosis?

    NF is the term for a set of genetic disorders whose primary feature is the growth of tumors derived from nerve cells.  There are two major types of NF.  NF1 is the most common type, affecting one in 3,000 births.  NF1 can be characterized by changes in skin pigment, tumors, bone abnormalities and frequent learning disabilities (see NF1 Diagnostic Criteria). NF2 is a separate genetic disorder and is characterized by tumors of the eighth cranial nerves and other nerves, which can result in hearing loss and other complications.  Patients who have a family history of NF1 are not at increased risk for NF2 and vice versa.

    Segmental NF is a form of NF1 where features are seen in only a limited segment of the body, not the entire body.

    Schwannomatosis is a rare form of NF that has only recently been organized.  Persons with schwannomatosis develop multiple schwannomas (Schwann cell tumors) on cranial, spinal and peripheral nerves, without other signs of NF1 or NF2.  These tumors are often limited to a single segment of the body.

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    NF1 Diagnostic Criteria

    The diagnosis of NF1 is considered to be established in patients having TWO OR MORE of the features listed below:

    • Six or more café-au-lait spots measuring at least 5 mm before puberty or 15mm after puberty
    • Two or more neurofibromas or one plexiform neurofibroma
    • Freckles in the axilla (armpits) or groin
    • Lisch nodules on the iris of the eye
    • Optic nerve glioma
    • Characteristic abnormality of bone such as sphenoid wing dysplasia or anterolateral bowing of the lower leg, with or without pseudarthrosis
    • A diagnosis of NF1 in a first-degree family member (parent, sibling or offspring)

    NF2 Diagnostic Criteria

    A diagnosis of NF2 is established in a patient who has:

    • Bilateral vestibular schwannomas (also know as acoustic neuromas) OR
    • Family history of NF2 in a first degree relative, PLUS
      • A single (unilateral) vestibular schwannoma OR
      • Any two of the following: meningioma, glioma, schwannoma or juvenile posterior cataract

 
  • Contact Us

    To make a referral to the NF Center: Call 513-636-1861 or fax referral to 513-636-7297.

    To schedule an appointment: Call 513-636-1861.

    For additional information about the NF Center: Contact: Anne Lovell, RN, MSN, NF center coordinator, at 513-636-8826 or 800-344-2462, ext. 6-8826.

  • Purpose of the NF Center

    To accurately diagnose referred patients and provide counseling and education about NF

    To provide our patients with comprehensive management of NF related medical, psychosocial and learning issues

    To collaborate with referring physicians in the care and treatment of patients with NF

    To connect NF patients and family members to local/national support organizations

    To provide opportunities for NF patients to participate in clinical research trials which may improve their outcome