Article
The Peripheral-Nerve-Tumor-Registry – study design, current state and preliminary retrospective two-year analysis
Das Periphere-Nerventumor-Register – Studiendesign, aktueller Stand und vorläufige retrospektive 2-Jahresanalyse
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Published: | May 8, 2019 |
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Objective: Since clinical trial evidence on peripheral nerve tumors (PNT) is scarce, no uniform treatment recommendations exist. Acknowledging the need for dedicated health services research on PNT, the PNT-Registry was initiated in 2017 to fill this relative blind spot in the literature. The main goal is to document current treatment strategies and the clinical course of PNT in a multicenter setup. We here present the study design, current state of the project as well as a preliminary retrospective data-collection on PNT surgery.
Methods: The PNT-Registry is a multicenter observational study with retrospective and prospective patient enrollment. Patients diagnosed with a tumor in association to a peripheral nerve are included. Clinical variables including new neurological deficits, tumor recurrence and pain as well as surgical strategies, histology and perioperative imaging are analyzed. Patient enrollment is under way at 3 centers and 7 further centers are currently applying for approval at their local ethics committees.
Results: Preliminary retrospective patient data (n=104) of three high volume centers showed a predominance of benign lesions in association to peripheral nerves (50% schwannoma, 19% neurofibroma and 19% miscellaneous). Malign tumors were only rarely detected (12%) and include malign peripheral nerve sheath tumors, Ewing sarcoma, fibromyxosarcoma and carcinoma metastases. 12% of patients with neurofibromatosis I were included.
Conclusion: Already at this early stage, the multi-center PNT-Registry is providing data on rare peripheral nerve lesions. Currently, the inclusion rate of patients with neurofibromatosis I is relatively low, compared to existing patient series in the literature. The upcoming recruitment phase at 7 additional centers will help improve the spectrum of PNTs in the registry.