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Neurofibromatosis Program

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Dr. Robert Listernick with patient Molly, 4 years old. (Photo credit: Amy Boyle Photography)

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. 

Services include: 

Specialists

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From left: Carlos Prada, MD; Michael Sawin; Katherine Kim, MS, CGC; Robert Listernick, MD; Allison Goetsch Weisman, MS, CGC; Madison Hankins, MS, CGC; and Joel Charrow, MD

What to Expect

The First Neurofibromatosis Clinic Visit
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From left: Madison Hankins, MS, CGC; Robert Listernick, MD; Katherine Kim, MS, CGC; Michael Sawin

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.

Make an Appointment

The Neurofibromatosis Clinic is held the first four Thursdays of each month at our Outpatient Center in Lincoln Park

467 West Deming Place
Suite 900
Chicago, IL 60614

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.

Questions? 

For more information, please contact program coordinator Madison Hankins at 312.227.6120

Our Research

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)
  • Whole-body MRI
  • Dietary log (before visit)

If you have questions or are interested in participating in the study, please contact one of our study coordinators:

Carolyn Serbinski (Phone: 312.227.4391 | Email: cserbinski@luriechildrens.org)

Michael Sawin (Phone: 312.227.2816 | msawin@luriechildrens.org)

Publications

  1. Goetsch Weisman A, Haws T, Lee J, Lewis AM, Srdanovic N, Radtke HB. Transition Readiness Assessment in Adolescents and Young Adults with Neurofibromatosis Type 1 (NF1). Compr Child Adolesc Nurs. 2020 Sep 24:1-17. doi: 10.1080/24694193.2020.1806402. Epub ahead of print. PMID: 32969737.
  2. Radtke HB, Bergner AL, Goetsch AL, McGowan C, Panzer K, Cannon A. Genetic Counseling for Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis-Practice Resource of the National Society of Genetic Counselors. J Genet Couns. 2020 Oct;29(5):692-714. doi: 10.1002/jgc4.1303. Epub 2020 Jun 29. PMID: 32602153.
  3. Ullrich NJ, Prabhu SP, Reddy AT, Fisher MJ, Packer R, Goldman S, Robison NJ, Gutmann DH, Viskochil DH, Allen JC, Korf B, Cantor A, Cutter G, Thomas C, Perentesis JP, Mizuno T, Vinks AA, Manley PE, Chi SN, Kieran MW. A phase II study of continuous oral mTOR inhibitor everolimus for recurrent, radiographic-progressive neurofibromatosis type 1-associated pediatric low-grade glioma: a Neurofibromatosis Clinical Trials Consortium study. Neuro Oncol. 2020 Oct 14;22(10):1527-1535. doi: 10.1093/neuonc/noaa071. PMID: 32236425; PMCID: PMC7566451.
  4. Heidary G, Fisher MJ, Liu GT, Ferner RE, Gutmann DH, Listernick RH, Kapur K, Loguidice M, Ardern-Holmes SL, Avery RA, Hammond C, Hoffman RO, Hummel TR, Kuo A, Reginald A, Ullrich NJ. Visual field outcomes in children treated for neurofibromatosis type 1-associated optic pathway gliomas: a multicenter retrospective study. J AAPOS. 2020 Dec;24(6):349.e1-349.e5. doi: 10.1016/j.jaapos.2020.07.013. Epub 2020 Nov 20. PMID: 33221469.
  5. Fisher MJ, Shih CS, Rhodes SD, Armstrong AE, Wolters PL, Dombi E, Zhang C, Angus SP, Johnson GL, Packer RJ, Allen JC, Ullrich NJ, Goldman S, Gutmann DH, Plotkin SR, Rosser T, Robertson KA, Widemann BC, Smith AE, Bessler WK, He Y, Park SJ, Mund JA, Jiang L, Bijangi-Vishehsaraei K, Robinson CT, Cutter GR, Korf BR; Neurofibromatosis Clinical Trials Consortium, Blakeley JO, Clapp DW. Cabozantinib for neurofibromatosis type 1-related plexiform neurofibromas: a phase 2 trial. Nat Med. 2021 Jan;27(1):165-173. doi: 10.1038/s41591-020-01193-6. Epub 2021 Jan 13. PMID: 33442015; PMCID: PMC8275010.
  6. Kinori M, Armarnik S, Listernick R, Charrow J, Zeid JL. Neurofibromatosis Type 1-Associated Optic Pathway Glioma in Children: A Follow-Up of 10 Years or More. Am J Ophthalmol. 2021 Jan;221:91-96. doi: 10.1016/j.ajo.2020.03.053. Epub 2020 Apr 10. PMID: 32283094.
  7. Weiss BD, Wolters PL, Plotkin SR, Widemann BC, Tonsgard JH, Blakeley J, Allen JC, Schorry E, Korf B, Robison NJ, Goldman S, Vinks AA, Emoto C, Fukuda T, Robinson CT, Cutter G, Edwards L, Dombi E, Ratner N, Packer R, Fisher MJ. NF106: A Neurofibromatosis Clinical Trials Consortium Phase II Trial of the MEK Inhibitor Mirdametinib (PD-0325901) in Adolescents and Adults With NF1-Related Plexiform Neurofibromas. J Clin Oncol. 2021 Mar 1;39(7):797-806. doi: 10.1200/JCO.20.02220. Epub 2021 Jan 28. PMID: 33507822; PMCID: PMC8078274.
  8. Fangusaro J, Onar-Thomas A, Poussaint TY, Wu S, Ligon AH, Lindeman N, Campagne O, Banerjee A, Gururangan S, Kilburn L, Goldman S, Qaddoumi I, Baxter P, Vezina G, Bregman C, Patay Z, Jones JY, Stewart CF, Fisher MJ, Doyle LA, Smith M, Dunkel IJ, Fouladi M. A Phase 2 Trial of Selumetinib in Children with Recurrent Optic Pathway and Hypothalamic Low-Grade Glioma without NF1: A Pediatric Brain Tumor Consortium Study. Neuro Oncol. 2021 Feb 25:noab047. doi: 10.1093/neuonc/noab047. Epub ahead of print. PMID: 33631016.
  9. 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.
  10. Ullrich NJ, Prabhu SP, Packer RJ, Goldman S, Robison NJ, Allen JC, Viskochil DH, Gutmann DH, Perentesis JP, Korf BR, Fisher MJ, Kieran MW; NF Clinical Trials Consortium. Visual outcomes following everolimus targeted therapy for neurofibromatosis type 1-associated optic pathway gliomas in children. Pediatr Blood Cancer. 2021 Apr;68(4):e28833. doi: 10.1002/pbc.28833. Epub 2020 Dec 18. PMID: 33336845.
  11. Talley MJ, Nardini D, Shabbir N, Ehrman LA, Prada CE, Waclaw RR. Generation of a Mouse Model to Study the Noonan Syndrome Gene Lztr1 in the Telencephalon. Front Cell Dev Biol. 2021 Jun 16;9:673995. doi: 10.3389/fcell.2021.673995. PMID: 34222248; PMCID: PMC8242193.
  12. Legius E, Messiaen L, Wolkenstein P, Pancza P, Avery RA, Berman Y, Blakeley J, BabovicVuksanovic D, Cunha KS, Ferner R, Fisher MJ, Friedman JM, Gutmann DH, Kehrer-Sawatzki H, Korf BR, Mautner VF, Peltonen S, Rauen KA, Riccardi V, Schorry E, Stemmer-Rachamimov A, Stevenson DA, Tadini G, Ullrich NJ, Viskochil D, Wimmer K, Yohay K; International Consensus Group on Neurofibromatosis Diagnostic Criteria (I-NF-DC)*, Huson SM, Evans DG, Plotkin SR. Revised diagnostic criteria for neurofibromatosis type 1 and Legius syndrome: an international consensus recommendation. Genet Med. 2021 Aug;23(8):1506-1513. doi: 10.1038/s41436-021-01170-5. Epub 2021 May 19. PMID: 34012067; PMCID: PMC8354850.
  13. Kotch C, Avery R, Getz KD, Bouffet E, deBlank P, Listernick R et al. Risk Factors for Treatment Refractory and Relapsed Optic Pathway Glioma in Children with Neurofibromatosis Type 1 Neuro Oncol. 2022. PMID: 35018469.

Conditions We Treat