Registry for Malignant Endocrine Tumors in Children and Adolescents

A malignant endocrine tumor is an umbrella term for malignant diseases of the endocrine system in which hormone-producing cells multiply uncontrollably. Various organs can be affected, such as the thyroid, the adrenal glands, or the digestive system. These rare malignant tumors can grow rapidly, invade healthy tissue and destroy it, and develop metastases (distant spread to other organs). Some tumor cells can produce hormones on their own, which can lead to metabolic imbalances and various symptoms. The choice of specific treatment depends on numerous factors (stage of the disease, tumor type, the patient’s condition, etc.) and should be tailored individually to each patient. Options include surgery, chemotherapy, radiation therapy, radioiodine therapy, and targeted drug therapy (e.g., with so-called immune checkpoint inhibitors or tyrosine kinase inhibitors). Data on these rare childhood tumors are limited, so treatment is based on case reports and retrospective observational studies. These findings are derived from analyses of previous treatments.

The goal of the MET Registry is to improve the treatment of malignant endocrine tumors through long-term, centralized documentation of treatment and disease progression. Tumor tissue obtained during diagnosis, as well as blood and urine samples, are collected and examined in detail. There is also the option of consultation for the treating physicians. For this purpose, recommendations for the best possible treatment are provided following a review by a panel of experts. This is a prospective observational study (long-term observational study) designed to uniformly collect data across various treatment centers. Based on this registry, the study aims, among other things, to identify new risk and prognostic factors and to establish standards for diagnosis and treatment. No new forms of therapy or medications are being tested as part of the MET Registry Study. To date, no fixed endpoint has been established for this long-term observational study.

Children and adolescents up to age 18 with malignant endocrine tumors are eligible to participate in this registry.