Lurie Children’s is a member of the Neurofibromatosis Clinic Network. Our Neurofibromatosis (NF) Clinic Team has demonstrated the ability to provide the specialty care needed by children with NF and their families. We see more than 300 patients with NF each year, and provide comprehensive care from the first clinic visit through the transition to adult care. We take a team approach to take care of children with all forms of NF, including NF1.
A child’s first appointment in our clinic begins before they arrive. Our team reviews the child’s medical records and one of our genetic counselors calls the family to discuss why the child was referred to us, what to expect at the appointment, and to review the child’s medical and family history.
Children are evaluated by both members of the Divisions of Genetics and Ophthalmology in the same clinic space. We pack a lot into the clinic visit, so families are told to plan for 2 ½ to 3 hours. Each clinic visit includes a complete eye exam and a thorough physical exam. We check bones and growth, skin, heart and lungs, and neurologic function. We also allow plenty of time to talk with the doctors and genetic counselor about the findings from the exams and possible next steps to be taken.
Annual Clinic Visits
If children are doing well, they are seen again in one year for another detailed body and eye exam to look for any complications of NF. However, if any concerns arise between annual visits, our team is always available to help the children and families in our care.
NF Transitions Program
At Lurie Children’s, we feel strongly that teens and young adults should understand how NF impacts their health and life. We want them to feel confident taking control of their own healthcare once they are in their early 20s. This process is called healthcare transition and it starts around age 14 years. We begin to include more education about NF and may even assign your teen “homework” to help them begin to learn how to fill prescriptions, call a doctor’s office and explain their condition to others. This process is important because it has shown to lead to better health outcomes in adulthood.
To schedule a first-time or return appointment in the Neurofibromatosis Clinic, please contact the Division of Genetics directly at 312.227.6120.
Note: Urgent appointments are available most Mondays and Fridays. Please call the Division of Genetics to speak with an NF provider if your child needs an urgent evaluation.
For more information, please contact program coordinator Madison Hankins at 312.227.6120.
Current Research Study
Now Enrolling: Developing Novel Biomarkers of Plexiform Neurofibroma Tumor Burden (Principal Investigator: Carlos Prada, MD)
We want to identify and increase our understanding of tumor biomarkers in children and adults with NF1. Biomarkers are like signals in the body that we can measure. They can tell us about the progress of a disease or treatment.
We are recruiting patients with Neurofibromatosis type 1 (NF1) to take part in a research study.
Participation is completely voluntary and will not change the standard of care you or your child receive.
If you decide to participate in the study, you or your child will be scheduled for a study visit at the main hospital. During the visit, you may complete:
Blood sample drawn (2 to 4 teaspoons)
Dietary log (before visit)
If you have questions or are interested in participating in the study, please contact one of our study coordinators:
Fisher MJ, Jones DTW, Li Y, Guo X, Sonawane PS, Waanders AJ, Phillips JJ, Weiss WA, Resnick AC, Gosline S, Banerjee J, Guinney J, Gnekow A, Kandels D, Foreman NK, Korshunov A, Ryzhova M, Massimi L, Gururangan S, Kieran MW, Wang Z, Fouladi M, Sato M, Øra I, Holm S, Markham SJ, Beck P, Jäger N, Wittmann A, Sommerkamp AC, Sahm F, Pfister SM, Gutmann DH. Integrated molecular and clinical analysis of low-grade gliomas in children with neurofibromatosis type 1 (NF1). Acta Neuropathol. 2021 Apr;141(4):605-617. doi: 10.1007/s00401-021-02276-5. Epub 2021 Feb 14. PMID: 33585982.