Description for experts
The registry collects data and provides advice. Therapy should be carried out in accordance with the standard of care.
Collection of epidemiological data
Collection of information on treatment and treatment outcome and retrospective evaluation of the relationship between intervention and outcome
Recording of late effects
Assessment of the quality of treatment through data collection, data review and consultation by the registry centre and the reference institutions
Creation of a tumour bank as a basis for future biological research projects to identify new risk factors and targets for targeted therapeutics.
Description for laymen
JSON Data
{
"short_title": "Kraniopharyngeom Registry 2019",
"data_mode": "900",
"data_mode_number": "000002464",
"official_title": "Multizentrisches Register f\u00fcr Kinder und Jugendliche mit Kraniopharyngeom, Xanthogranulom, Zysten der Rathkeschen Tasche, Meningeom, Hypophysenadenom, Arachnoidalzyten",
"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": "Dr. med. Claudia Zinke",
"description_laie_de": "Das Register sammelt Daten und ber\u00e4t. Die Therapie sollte entsprechend des Standard of care erfolgen.\r\n\r\nSammlung epidemiologischer Daten\r\nSammlung von Informationen zu Behandlung und Behandlungsergebnis sowie retrospektive Auswertung des Zusammenhangs zwischen Intervention und Ergebnis\r\nErfassung von Sp\u00e4tfolgen\r\nBeurteilung der Qualit\u00e4t der Behandlung durch Datensammlung, Daten\u00fcberpr\u00fcfung und Beratung durch das Registerzentrum und die Referenzeinrichtungen\r\nSchaffung einer Tumorbank als Grundlage f\u00fcr zuk\u00fcnftige biologische Forschungsvorhaben zur Identifizierung neuer Risikofaktoren und Angriffspunkte f\u00fcr zielgerichtete Therapeutika",
"description_laie_en": null,
"description_expert_de": null,
"description_expert_en": "The registry collects data and provides advice. Therapy should be carried out in accordance with the standard of care.\r\n\r\nCollection of epidemiological data\r\nCollection of information on treatment and treatment outcome and retrospective evaluation of the relationship between intervention and outcome\r\nRecording of late effects\r\nAssessment of the quality of treatment through data collection, data review and consultation by the registry centre and the reference institutions\r\nCreation of a tumour bank as a basis for future biological research projects to identify new risk factors and targets for targeted therapeutics.",
"rechtsgrundlage_value": "BO",
"phase_amg_value": null,
"main_cat_id": 14,
"sub_cat_id": 62
}
