Case Report: First description of an intracranial “NET” in ROHHAD syndrome; time to rename to the ROHHAD-NeCT syndrome? - Takeaways - MDSpire

Case Report: First description of an intracranial “NET” in ROHHAD syndrome; time to rename to the ROHHAD-NeCT syndrome?

  • By

  • Nathalie J. Doelman-Oldenburger

  • Antoinette Y. N. Schouten-van Meeteren

  • Mariette E. G. Kranendonk

  • Kim Boshuisen

  • Michiel A. G. E. Bannier

  • Hanneke M. van Santen

  • May 29, 2026

  • 0 min

Share

  • 1

    ROHHAD syndrome is characterized by rapid-onset obesity, hypothalamic dysfunction, hypoventilation, and autonomic dysregulation.

  • 2

    Approximately 40-50% of ROHHAD patients have neuro-endocrine tumors, typically located extracranially.

  • 3

    This report presents the first known case of an intracranial ganglion cell tumor in a patient with ROHHAD syndrome.

  • 4

    Diagnosis of ROHHAD syndrome is challenging due to the absence of a specific diagnostic test.

  • 5

    The case raises questions about the classification of tumors in ROHHAD syndrome, suggesting a potential renaming to ROHHAD-NeCT syndrome.

Original Source(s)

Case Report: First description of an intracranial “NET” in ROHHAD syndrome; time to rename to the ROHHAD-NeCT syndrome?

  • by Nathalie J. Doelman-Oldenburger, Antoinette Y. N. Schouten-van Meeteren, Mariette E. G. Kranendonk, Kim Boshuisen, Michiel A. G. E. Bannier, Hanneke M. van Santen

  • May 29, 2026

Related Content

Retraction: MicroRNA-935 directly targets FZD6 to inhibit the proliferation of human glioblastoma and correlate to glioma malignancy and prognosis

  • May 28, 2026

Biotech exec Jeremy Levin on the industry’s strategic turning point

Stimuli-responsive nanoplatforms for sonodynamic immunotherapy: opportunities and challenges in cancer treatment