In contrast to therapy studies, the register does not encompass the management of patient treatment.
In order to avoid redundancy among the various structures, patients with syndromes for which pre-existing register activities (e.g. hereditary retinoblastoma, rhabdoid tumor predisposition, or syndromes leading to myelodysplastic syndromes or JMML) are performed, will not be re-registered or only be registered in the context of a closer collaboration.
Documentation is compiled using the XClinical company’s MARVIN software (a central data management system of the Pediatric Oncology and Hematology Association).
Recently, self-registration has also been available for patients and their parents or guardians. In this case, the information and registration is conducted directly by the Registry doctors in a personal or telephone conversation. You will find more detailed information on this in the download area further down on this page.