{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T04:02:49Z","timestamp":1787025769011,"version":"build-2736575974"},"reference-count":134,"publisher":"Journal of Neurosurgery Publishing Group (JNSPG)","issue":"5","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2022,5]]},"abstract":"\n OBJECTIVE<\/jats:title>\n Neurocutaneous syndromes have variable multisystem involvement. The multiorgan involvement, potential pathologies, and various treatment options necessitate collaboration and open discussion to ensure optimal treatment in any given patient. These disorders provide quintessential examples of chronic medical conditions that require a lifelong, multidisciplinary approach. The objectives of this study were to 1) perform a systematic review, thoroughly assessing different multidisciplinary clinic layouts utilized in centers worldwide; and 2) characterize an institutional experience with the management of these conditions, focusing on the patient demographics, clinical presentation, complications, and therapeutic strategies seen in a patient population.<\/jats:p>\n <\/jats:sec>\n \n METHODS<\/jats:title>\n A systematic review of studies involving multidisciplinary clinics and their reported structure was performed according to PRISMA guidelines using the PubMed database. Then a retrospective chart review of patients enrolled in the Oklahoma Children\u2019s Hospital Neurocutaneous Syndromes Clinic was conducted.<\/jats:p>\n <\/jats:sec>\n \n RESULTS<\/jats:title>\n A search of the PubMed database yielded 251 unique results. Of these, 15 papers were included in the analysis, which identified 16 clinics that treated more than 2000 patients worldwide. The majority of these clinics treated patients with neurofibromatosis (13\/16). The remaining clinics treated patients with von Hippel\u2013Lindau syndrome (n = 1), tuberous sclerosis complex (n = 1), and multiple neurocutaneous syndromes (n = 1). The most commonly represented subspecialties in these clinics were genetics (15\/16) and neurology (13\/16). Five clinics (31%) solely saw pediatric patients, 10 clinics saw a combination of children and adults, and the final clinic had separate pediatric and adult clinics. The retrospective chart review of the Neurocutaneous Syndromes Clinic demonstrated that 164 patients were enrolled and seen in the clinic from April 2013 to December 2021. Diagnoses were made based on clinical findings or results of genetic testing; 115 (70%) had neurofibromatosis type 1, 9 (5.5%) had neurofibromatosis type 2, 35 (21%) had tuberous sclerosis complex, 2 (1%) had von Hippel\u2013Lindau syndrome, 2 (1%) had Gorlin syndrome, and the remaining patient (0.6%) had Aarskog-Scott syndrome. Patient demographics, clinical presentation, complications, and therapeutic strategies are also discussed.<\/jats:p>\n <\/jats:sec>\n \n CONCLUSIONS<\/jats:title>\n To the best of the authors\u2019 knowledge, this is the first detailed description of a comprehensive pediatric neurocutaneous clinic in the US that serves patients with multiple syndromes. There is currently heterogeneity between described multidisciplinary clinic structures and practices. More detailed accounts of clinic compositions and practices along with patient data and outcomes are needed in order to establish the most comprehensive and efficient multidisciplinary approach for neurocutaneous syndromes.<\/jats:p>\n <\/jats:sec>","DOI":"10.3171\/2022.2.focus21776","type":"journal-article","created":{"date-parts":[[2022,5,1]],"date-time":"2022-05-01T03:01:18Z","timestamp":1651374078000},"page":"E2","source":"Crossref","is-referenced-by-count":12,"title":["Multidisciplinary neurocutaneous syndrome clinics: a systematic review and institutional experience"],"prefix":"10.3171","volume":"52","author":[{"given":"Audrey","family":"Grossen","sequence":"first","affiliation":[{"name":"Department of Neurosurgery, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"},{"name":"Department of Pediatric Neurosurgery, Oklahoma Children\u2019s Hospital, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Theresa","family":"Gavula","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deepti","family":"Chrusciel","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexander","family":"Evans","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"},{"name":"Department of Pediatric Neurosurgery, Oklahoma Children\u2019s Hospital, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rene","family":"McNall-Knapp","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ashley","family":"Taylor","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benay","family":"Fossey","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret","family":"Brakefield","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carrick","family":"Carter","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nadine","family":"Schwartz","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Naina","family":"Gross","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurosurgery, Saint Francis Hospital, Tulsa, Oklahoma"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Jea","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"},{"name":"Department of Pediatric Neurosurgery, Oklahoma Children\u2019s Hospital, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Virendra","family":"Desai","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;"},{"name":"Department of Pediatric Neurosurgery, Oklahoma Children\u2019s Hospital, Oklahoma City, Oklahoma;"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1754","reference":[{"issue":"1","key":"b1","series-title":"Neurosurg Focus","doi-asserted-by":"publisher","first-page":"E2","DOI":"10.3171\/foc.2006.20.6.2","article-title":"Neurosurgical implications of neurofibromatosis Type I in children","volume":"20","author":"Al-Otibi M","year":"2006","unstructured":"Al-Otibi M, Rutka JT. 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