C73 D35 D44.0 D44.6 D44.7 D44.8 C74 C75 C75.8 C80 D13 C25 C18 C34 C34.2 C37 C17 C17.3 C53 C54
Conditions
Interventions
Group 1: Patients with a malignant disease are initially reported to the German Childhood Cancer Registry (DKKR) by the pediatric oncology centers treating them. This generates a PatID (patient identi
Sponsors
Universitätskinderklinik
Eligibility
Sex/Gender
All
Age
0 Years to 18 Years
Inclusion criteria
Inclusion criteria: 1. Diagnosis of the following tumor entities: a) Thyroid carcinomas (TC) - differentiated thyroid carcinoma (DTC) - medullary thyroid carcinoma (MTC) - C-cell hyperplasia (CCH) with pathogenic variant in the RET proto-oncogene - other thyroid carcinomas b) Adrenocortical tumors (ACT) - adrenocortical carcinoma (ACC) - adrenocortical adenomas (ACA) - adrenocortical tumors of uncertain dignity (ACx) c) pheochromocytoma (PCC), paraganglioma (PGL) d) gastroenteropancreatic neuroendocrine neoplasia (GEP-NEN) Neuroendocrine tumors (NET) and carcinomas (NEC) of the appendix, bronchus, pancreas and other locations 2. Age at diagnosis: 0 to 18 years of age Even in the case of young adult patients, the MET Help Desk can provide consultation after consenting to the transfer of data. 3. Information, education, written consent of the patient or legal representitive to participate in the MET registry.
Exclusion criteria
Exclusion criteria: Lack of consent of the patient or the legal representitive to participate in the register.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary objectives of the MET Registry include: 1. The prospective registration of all children and adolescents with an initial diagnosis of a malignant endocrine tumor between the ages of 0 and 18 years 2. The scientific evaluation with the aim of optimizing the therapy of affected patients | — |
Secondary
| Measure | Time frame |
|---|---|
| The secondary objectives support the primary objectives and include: 1. Ensuring central interdisciplinary advice on individual disease progression in discussion with the respective therapists by the MET Help Desk as part of a: a. virtual interdisciplinary tumor boards (STEP-MET tumor board) b. specific boards (e.g. reference center for nuclear medicine) c. "virtual tumor consultation systems" (for highly complex cases with the European EXPeRT group) 2. Health services research and quality assurance of patient care through: a. Ensuring entity-specific reference diagnostics b. Ensuring effective surgical therapy c. Systematic long-term observation of patients to record disease- and therapy-associated complications and late effects 3. Networking: a. Expansion of digital information forms and content for patients and treating physicians b. Expansion of cooperation in guideline groups and contact with patient organizations and self-help groups (e.g. from Hippel-Lindau ACHSE, EURORDIS, RareConnect) 4. Research a. Provision of central clinical and biological data from registered patients for current and future national and international collaborations and scientific projects and issues b. Provision of central biological data in order to be able to refer patients to current or future phase I/II/III studies outside of the registry c. Preservation of biomaterials for current and future research projects d. i.e. Identification of new risk and prognosis factors | — |
Countries
Germany
Contacts
Public ContactAntje Redlich
Universitätskinderklinik
Outcome results
None listed