The UMBRELLA Study to Improve Standardized Diagnosis and Treatment of Kidney Tumors in Children, Adolescents, and Young Adults

Kidney tumors in children, adolescents, and young adults are rare and often go unnoticed for a long time, as patients are frequently asymptomatic even at the time of diagnosis. Nephroblastoma, also known as Wilms tumor, is by far the most common form of childhood kidney cancer, while other types of tumors are significantly less common. This tumor occurs almost exclusively in childhood and has a very good cure rate today. Currently, treatment is usually planned based on factors such as tumor size, stage, the child’s age, and histological findings. Classifying patients into risk groups helps tailor therapy to the severity of the disease. However, even in so-called low-risk groups—that is, in cases with seemingly milder courses—relapses can still occur. At the same time, overly aggressive treatment in high-risk groups can lead to extensive side effects. To better tailor treatment to individual patients in the future, more precise information about the biological characteristics of the tumors is needed. The UMBRELLA study collects this data and thus helps to further develop existing treatment guidelines and apply them in a more targeted manner.

The goal of the UMBRELLA study is to standardize the diagnosis of pediatric kidney tumors—that is, the tests used to precisely determine the disease—across all participating countries. This applies to both imaging techniques (such as ultrasound, MRI, or CT) and the collection and analysis of tumor tissue and other samples. Through careful analysis of these samples, the study aims to identify new biological characteristics of the tumor at the cellular level—so-called molecular markers—that may help better assess the risk of recurrence for individual patients in the future. The UMBRELLA study is not a therapeutic trial but rather an observational study (non-interventional), which means that participation has no impact on the treatment itself, as treatment follows the existing treatment protocol. The study involves only the collection, gathering, and analysis of data so that future treatments can be individually tailored, patients can be treated according to their risk group, and side effects can be reduced. The UMBRELLA study thus lays the foundation for better, more targeted, and gentler treatments in the future.

All children and adolescents with a kidney tumor, as well as adults with nephroblastoma, are eligible to participate, provided the diagnosis was made at a participating hospital. These hospitals are required to adhere to the protocol of the UMBRELLA SIOP-RTSG 2016 study. There is no set minimum or maximum age; the only exclusion criterion is the lack of a signed informed consent form.