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S208: THE ROAD TO CONSENSUS IN CRANIOCERVICAL CHORDOMA MANAGEMENT: A NIH MODIFIED DELPHI SURVEY
Anthony Tang, BS¹; Bastien Valencia, MD²; Anthony P Conley, MD³; Claire Stokes, MD⁴; Patrick C Walz, MD⁵; Shaan M Raza, MD⁶; Uma Ramaswamy, MD⁷; Vinai Gondi, MD^8,9; Ziya Gokaslan, MD¹⁰; Guillermo Aldave Orzaiz, MD, PhD¹¹; Erin McKean, MD¹²; Myrsini Ioakeim-Ioannidou, MD¹³; Shannon MacDonald, MD¹³; Michael McDowell, MD¹⁴; Eric W Wang, MD¹⁵; Paul A Gardner, MD¹⁶; Carl H Snyderman, MD, MBA¹⁵; Mary Frances Wedekind, DO¹⁷; Vijay Patel, MD¹⁸; Sean Polster, MD¹⁹; ¹University of Pittsburgh, School of Medicine; ²Department of Otolaryngology/Head and Neck Surgery, Mayo Clinic, Jacksonville, FL, USA; ³Sarcoma Medical Oncology, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA; ⁴Aflac Cancer & Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA; ⁵Department of Otolaryngology, The Ohio State University Wexner Medical Center, Columbus, OH, USA; ⁶Department of Neurosurgery, The University of Texas MD Anderson Cancer Center, Houston, TX, USA; ⁷Department of Neurosurgery, Baylor College of Medicine, Houston, Texas, USA; ⁸Northwestern Medicine Chicago Proton Center, Warrenville, IL, USA; ⁹Northwestern Medicine Cancer Center Warrenville, Brain & Spine Tumor Center, Warrenville, IL, USA; ¹⁰Department of Neurosurgery, The Warren Alpert Medical School of Brown University, Providence, Rhode Island; ¹¹Department of Surgery, Division of Pediatric Neurosurgery, Texas Children's Hospital, Houston; ¹²Department of Otolaryngology and Neurosurgery, University of Michigan, Ann Arbor, Michigan; ¹³Department of Radiation Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA; ¹⁴Department of Neurosurgery, PennState Health; ¹⁵Department of Otolaryngology-Head and Neck Surgery, University of Pittsburgh, Pittsburgh, PA; ¹⁶Department of Neurosurgery, University of Pittsburgh, Pittsburgh, USA; ¹⁷Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, Maryland, USA; ¹⁸Department of Otolaryngology-Head and Neck Surgery, University of California San Diego, La Jolla, California, USA; ¹⁹Department of Neurological Surgery, University of Chicago Medicine and Biological Sciences, Chicago, Illinois, USA

Background: Chordoma represents a rare and locally aggressive tumor thought to originate from notochordal remnants. Classically, implementation barriers for clinical guidelines in rare tumors include a lack of evidence-based recommendations due to disease heterogeneity, capturing advancements in novel treatment strategies, and limited clinical research studies. For these reasons, developing and defining best practices in managing this complex disease is critical and requires expert consensus. The NIH Pediatric/Young Adult Chordoma Clinic and natural history study was established under the MyPART network via the National Cancer Institute in 2019 to help standardize care for these patients nationwide. A multidisciplinary committee of clinicians and surgeons was formed, which developed a series of Delphi consensus statements covering a wide range of management considerations for craniocervical chordoma.

Methods: A modified Delphi steering committee identified topics across the diagnostic and therapeutic spectrum of craniocervical chordoma management, including tumor definition, histopathology, imaging, biopsy, surgical resection, medical therapies, adjuvant radiotherapy, surveillance, recurrence, and survivorship. Thirty-four preliminary consensus statements were drafted in April 2024. These statements were distributed to a panel of 19 North American experts in neurosurgery, otolaryngology, medical oncology, pediatric oncology, and radiation oncology who attended the 2024 NIH Pediatric/Young Adult Chordoma Clinic. Panelists were asked to rate each statement using a 7-point Likert scale ranging from “strongly disagree” to “strongly agree.” Consensus was defined a priori as ≥75% agreement from at least 60% of respondents. A free-text comment option allowed for proposed revisions. Statements that did not meet consensus in round one were revised and redistributed in a second round during the 2025 NIH Pediatric/Young Adult Chordoma Clinic.

Results: All 19 invited panelists participated. The composition of responses included neurosurgeons (31.6%), otolaryngologists (31.6%), medical oncologists (15.8%), radiation oncologists (15.8%), and one pediatric oncologist (5.2%). In round one, 27 of 34 statements (79.4%) achieved consensus (Figure 1). The 7 remaining statements, addressing biopsy strategy, systemic staging, surgical margin classification, genomic testing, surveillance protocols, metastatic work-up, and recurrence management, were revised based on expert feedback and redistributed. Following round two, 4 additional statements reached the predefined consensus threshold, resulting in a final set of 31 accepted consensus statements (Figure 2). Three statements failed to reach consensus after two rounds. These domains included margin status, patient surveillance, and disease recurrence.

Conclusion: This work represents a modern approach to consensus utilizing the modified Delphi survey for craniocervical chordoma. Expert consensus was achieved across a broad range of domains spanning from diagnosis, treatment, and long-term follow-up. Importantly, areas of divergence—such as optimal margin status, imaging frequency during surveillance, and recurrence disease management—underscore the continued challenges in managing this rare and complex disease. However, these consensus statements now provide a clear multidisciplinary framework to standardize patient care and highlight critical knowledge gaps for future research endeavors.

 

 

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