late effects after treatment in patients with previously diagnosed high-risk neuroblastoma

Conditions: Recurrent Neuroblastoma; Stage 2A Neuroblastoma; Stage 2B Neuroblastoma; Stage 3 Neuroblastoma; Stage 4 Neuroblastoma; Stage 4S Neuroblastoma

Summary: this research trial studies late effects after treatment in patients with previously diagnosed high-risk neuroblastoma. studying late effects after treatment may help to decide which treatments for high-risk neuroblastoma are better tolerated with less side effects over time.

primary objectives: i. to estimate the prevalence of organ dysfunction, subsequent malignant neoplasm (smn), growth impairment, abnormal pubertal development, and neurobehavioral dysfunction in a large cohort of representative 5-year survivors of high-risk neuroblastoma treated with modern therapy. ii. to identify the demographic, clinical and treatment-related risk factors associated with increased risk of organ dysfunction, smn, growth impairment, abnormal pubertal development and neurobehavioral dysfunction in long-term survivors of high-risk neuroblastoma. iii. to explore the impact of new biologic therapies and diagnostics including immunotherapy, immunocytokines, isotretinoin (cis-retinoic acid) and iobenguane i-131 (131 i-mibg) on the risk of late effects. iv. to determine the impact of impaired organ function, physical growth, pubertal development, and neurobehavioral function on health-related quality of life (hrqol) in long-term survivors of high-risk neuroblastoma. secondary objectives: i. to establish a cohort of high-risk neuroblastoma survivors, with stored peripheral blood samples, who were treated with multi-modal therapies since the year 2000 as a resource for future investigation. outline: patients undergo collection of blood and urine samples on day 1. patients also undergo clinical assessments, laboratory, radiographic, and other ancillary studies on day 1.

Eligibility criteria:
inclusion criteria: * patients must have been enrolled on cog neuroblastoma biology study anbl00b1 * patient must have been diagnosed with high-risk neuroblastoma per anbl00b1 definition * patient must have been diagnosed on or after january 1, 2000 * at least 5 years must have elapsed since diagnosis * patients must have been treated for high-risk neuroblastoma * note: patients may have had any therapy for high-risk neuroblastoma, including second line or non-established therapies (for example in the setting of less than optimal initial response or concerns for high risk of relapse); patients may have received therapy for refractory or relapsed neuroblastoma, or treatment for an smn; however all cytotoxic anti-neuroblastoma therapy should have been administered \>= 2 years of the enrollment date; smn therapy may be completed or ongoing at the time of enrollment exclusion criteria: * patients must not be currently receiving active anti-neuroblastoma cytotoxic chemotherapy * patients must not have received anti-neuroblastoma cytotoxic chemotherapy within the last two years * note: cytotoxic therapies include (but are not limited to) chemotherapy (platinum agents, alkylators, anthracyclines, topoisomerases, vinca alkaloids, other cytotoxic chemotherapy), any kind of transplant, mibg therapy, and/or radiation therapy * non-cytotoxic (biologic/targeted/differentiating/other) therapies are permitted at the time of enrollment; for example, patients receiving oral differentiating agents, antiangiogenic therapy, immune modulators, holistic therapies, difluoromethylornithine (dmfo), other minimal residual disease (mrd) therapies/relapse-prevention therapies are eligible * patients with current active neuroblastoma relapse are ineligible