Minimal data regarding the management of benign neuroblastic tumors exist. The management of ganglioneuroma (GN) is mixed, where existing retrospective data from single institution studies show operative resection leading to complications of up to 30%. Close observation has been proposed for asymptomatic patients with biopsy-proven GN for the following criteria: older age, CT without tumor calcifications, lack of MIBG avidity, and/or normal urine catecholamines. It is unclear whether MIBG avid tumors require resection. It is also unclear which symptoms should prompt resection. Given the rarity of these tumors, a multi-institutional study is needed to validate these approaches and develop consensus in management. We aim to:
1. Determine the current practice management of GN.
2. Determine outcomes of observation vs resection of GN.
3. Create a protocol for the management of GN that can be evaluated prospectively.
Study PI: Denise Klinkner, MD, MEd
Contact Chloé Boehmer (Chloe.Boehmer@cchmc.org) if you have any questions on how your site can participate in this study.
