Clinical Trials
These are the active and recently closed clinical trials most relevant to schwannomatosis patients. The STARFISH trial (NCT05684692) is covered in detail further below. All trials are registered on ClinicalTrials.gov.
Open — Actively Recruiting
INTUITT-NF2
A multi-arm Phase II platform basket trial testing multiple experimental therapies simultaneously in NF2-SWN patients with progressive tumors — vestibular schwannomas, non-vestibular schwannomas, meningiomas, and ependymomas. Participants may move between treatment arms if their tumors progress on one therapy. Current drug arms include brigatinib, neratinib, retifanlimab (a PD-1 immune checkpoint inhibitor), and bevacizumab. The trial will observe participants for up to 10 years.
View INTUITT-NF2 on ClinicalTrials.gov →STARFISH
STARFISH is testing two targeted therapies against the specific pain mechanisms implicated in schwannomatosis. Arm one tests siltuximab (Sylvant), an anti-IL-6 antibody targeting the inflammatory cytokine pathway involved in pain amplification. Arm two tests erenumab (Aimovig), an anti-CGRP antibody — CGRP (calcitonin gene-related peptide) is a neuropeptide central to the pain signaling pathway affected by SWN tumors. Phase II means safety work is done; this trial is measuring real patient pain outcomes. If results are positive, it may support moving these therapies toward standard of care for SWN pain.
View STARFISH on ClinicalTrials.gov →Closed — Awaiting or Reviewing Results
⁸⁹Zr-Bevacizumab PET/CT Imaging in NF2-SWN
Bevacizumab improves outcomes for some NF2-SWN patients — hearing, balance, tumor volume — but not for all, and it carries real toxicity and significant cost. This observational study validated a PET/CT imaging biomarker using zirconium-89-labeled bevacizumab to identify, before full treatment, which patients and tumors are likely to respond. If validated, this tool could help precisely target bevacizumab to the patients who will actually benefit from it.
View on ClinicalTrials.gov →Tanezumab for Schwannomatosis Pain
Tanezumab is an anti-NGF (nerve growth factor) antibody. NGF promotes the growth and maintenance of pain-sensing nerve fibers — blocking it is a tested strategy for chronic musculoskeletal and neuropathic pain. This pilot tested whether tanezumab provides meaningful pain relief in SWN patients across all subtypes who had not responded adequately to other treatments. Enrollment closed; primary data collection completed September 2022. Results have not yet been located in the published literature as of September 2026, approximately four years after primary data collection completed.
View on ClinicalTrials.gov →AZD2014 (Vistusertib) for NF2-SWN Meningiomas
AZD2014 (vistusertib) is a dual mTORC1/mTORC2 inhibitor. The mTOR signaling pathway drives cell growth and is implicated in NF2-related tumor development. This trial tested whether vistusertib could reduce the size of growing or symptomatic meningiomas, measured by radiographic response on MRI. The trial was sponsored by MGH in collaboration with AstraZeneca. This trial is complete — published results may be available in the literature.
View on ClinicalTrials.gov →