STEP 2.0 Register

Comprehensive prospective clinical data collection of particularly rare tumours in children and adolescents for a more precise definition, characterisation and classification of rare tumour entities, including long-term follow-up Provision of clinical data for retrospective subgroup analyses as part of research projects in order to contribute to improving the quality of diagnosis and treatment of children and adolescents with particularly rare tumour diseases Support for translational research projects Further development of the network for interdisciplinary cooperation in the field of rare tumours Expansion of international co-operation Cooperation with other GPOH registries, including the MET registry, the GPOH cancer predisposition registry and the INFORM registry Translated with DeepL.com (free version)

{ "short_title": "STEP 2.0 Register", "data_mode": "900", "data_mode_number": "000000978", "official_title": "Seltene Tumorerkrankungen in der P\u00e4diatrie STEP Register.\r\nRegister zur Verbesserung der epidemiologischen und klinischen Erfassung von Kindern und Jugendlichen mit besonders seltenen Tumoren.", "accrual_state": "running", "therapeutic_value": "nonTherapeutic", "therapieansatz_value": null, "therapieintervention_value": null, "therapielinie_value": null, "ctgov_number": null, "eudract_number": null, "general_contact_email": "Kik-dokuteam-hs65@ukdd.de", "general_contact_phone": "+49 351-4585035", "hauptpruefer_dd_name": "Tobias D\u00e4britz", "description_laie_de": "1. Fl\u00e4chendeckende prospektive klinische Datenerfassung besonders seltener Tumoren im Kindes- und Jugendalter zur genaueren Definition, Charakterisierung und Klassifikation der seltenen Tumorentit\u00e4ten inkl. Langzeit-Verlaufsbeobachtung\r\n\r\n2. Bereitstellung klinischer Daten f\u00fcr retrospektive Subgruppen-Analysen im Rahmen von Forschungsprojekten, um hierdurch an der Verbesserung der Qualit\u00e4t von Diagnostik und Behandlung von Kindern und Jugendlichen mit besonders seltenen Tumorerkrankungen beizutragen\r\n\r\n3. Unterst\u00fctzung translationaler Forschungsprojekte\r\n\r\n4. Weiterentwicklung des Netzwerks zur interdisziplin\u00e4ren Zusammenarbeit auf dem Gebiet der seltenen Tumoren\r\n\r\n5. Ausbau der internationalen Kooperationen\r\n\r\n6. Kooperation mit weiteren GPOH-Registern, u.a. mit dem MET-Register, dem Krebspr\u00e4dispositionsregister der GPOH sowie dem INFORM-Register", "description_laie_en": null, "description_expert_de": null, "description_expert_en": "Comprehensive prospective clinical data collection of particularly rare tumours in children and adolescents for a more precise definition, characterisation and classification of rare tumour entities, including long-term follow-up\r\nProvision of clinical data for retrospective subgroup analyses as part of research projects in order to contribute to improving the quality of diagnosis and treatment of children and adolescents with particularly rare tumour diseases\r\nSupport for translational research projects\r\nFurther development of the network for interdisciplinary cooperation in the field of rare tumours\r\nExpansion of international co-operation\r\nCooperation with other GPOH registries, including the MET registry, the GPOH cancer predisposition registry and the INFORM registry\r\n\r\nTranslated with DeepL.com (free version)", "rechtsgrundlage_value": "BO", "phase_amg_value": null, "main_cat_id": 14, "sub_cat_id": 67 }