Home Diseases and Conditions Neurofibromatosis

Neurofibromatosis

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Development Stage

Early Stage

Focused ultrasound research is in the laboratory phase and is not yet available for patients.

Clinical Trials

Focused ultrasound for this condition is being researched in clinical trials.

International Approval

Focused ultrasound is approved to treat this condition outside the US. Patients can seek commercial treatment at participating international sites.

FDA Approved

The US Food and Drug Administration has approved focus ultrasound for this condition. Patients can seek commercial treatment at participating sites.

Early Stage

Clinical Trials

International

FDA Approved

Focused ultrasound for this condition is being researched in clinical trials.

Focused Ultrasound Therapy

Focused ultrasound is a noninvasive, therapeutic technology with the potential to improve the quality of life and decrease the cost of care for patients with neurofibromatosis. This novel technology focuses beams of ultrasound energy precisely and accurately on targets deep in the body without damaging surrounding normal tissue.

How it Works
Where the beams converge, focused ultrasound produces thermal ablation of the targeted tumor.

Advantages
The primary options for treatment of neurofibromatosis, vary based on the location of the tumors, but can include medication and invasive surgery.

For certain patients, focused ultrasound could provide a noninvasive alternative to surgery with less risk of complications – such as surgical wound healing or infection – at a lower cost. It can reach the desired target without damaging surrounding tissue and is repeatable, if necessary.

Clinical Trials

A clinical trial for Neurofibromatosis type 1 that impacts peripheral nerves in adults has begun in Sweden.

The Foundation updates these pages regularly, but with the increasing number of clinical trials, we want to be sure that our audience has the latest information available. Therefore, we also added the website search information for the above trials. If you click here, it will take you to the latest information available from https://www.clinicaltrials.gov/. 

Regulatory Approval and Reimbursement

Focused ultrasound treatment for neurofibromatosis is not yet approved by regulatory bodies or covered by medical insurance companies.

Notable Papers

Wozniak B, Bove T, Zawada T, Calik J. Treatment of Cutaneous Neurofibromas in Patients with Neurofibromatosis Type 1. Case Rep Dermatol. 2023 Oct 20;15(1):194-201. doi: 10.1159/000534270. eCollection 2023. PMID: 37899948 

Tydings C, Yarmolenko P, Bornhorst M, Dombi E, Myseros J, Keating R, Bost J, Sharma K, Kim A. Feasibility of magnetic resonance-guided high-intensity focused ultrasound treatment targeting distinct nodular lesions in neurofibromatosis type 1. Neurooncol Adv. 2021 Aug 18;3(1):vdab116. doi: 10.1093/noajnl/vdab116. eCollection 2021 Jan-Dec. PMID: 34604751

Click here for additional references from PubMed.