Long-Term Outcomes and Quality of Life in Children and Adolescents with Genitourinary Rhabdomyosarcoma
- Feb 20
- 1 min read
Genitourinary Rhabdomyosarcoma (GU RMS) is the second most common type of RMS by primary location. After neoadjuvant chemotherapy, local control is typically achieved with surgical excision and/or radiotherapy. An overarching ethos is to proceed with surgical resection only if the tumour is completely resectable with negative margins and preservation of organ’s form and function can be expected. Specifically, current Children’s Oncology Group (COG) treatment protocols discourage radical surgery that would lead to removal of organs like the bladder or uterus and favor radiation therapy. There is a paucity of data on how patients with GU RMS fare from a long-term point of view, especially for quality of life and pelvic health. More studies are needed to assess the long-term effects of different treatment modalities as survivorship rates increase. The main aim of this study is to describe long-term quality of life outcomes for patients who have received surgery and/or radiation as a local control modality. The retrospective arm of this study will describe treatment modalities and clinical outcomes. The prospective arm of this study will use patient-reported outcome measures to assess health-related quality of life and bladder function.
Consortium PIs: Rodrigo Romao, Nicholas Cost, Amanda Buchanan
Please contact Maddie Peters (Madeline.Peteres@cchmc.org) if you have any questions about how to activate the study at your PSORC site.


