EORTC QoL RareCancer

This projects’ overarching goal is to improve HRQoL measuring practices for individuals with solid rare cancer diagnoses. Due to the diversity of tumours, therapies and patient experiences, it will be hard to develop a single HRQoL score for all rare malignancies. Understanding these variations is crucial when developing an HRQoL measuring technique. Such a measurement strategy will ensure that future research and clinical practice capture the most important outcomes to patients with rare cancer.

In collaboration with the Quality of Life Group of the European Organization for Research on Cancer Treatment (EORTC) and the Netherlands Cancer Institute, we would like to investigate how the health-related quality of life of people with rare cancers can best be assessed. Often there are no specific questionnaires for these diseases that can capture the specific problems well. Internationally, 500 patients will take part in the study. At Dresden University Hospital, we would like to recruit 15 patients as participants.

{ "short_title": "EORTC QoL RareCancer", "data_mode": "900", "data_mode_number": "000002290", "official_title": "Health-related quality of life measurement strategy for solid rare cancers", "accrual_state": "running", "therapeutic_value": "nonTherapeutic", "therapieansatz_value": "not_applicable", "therapieintervention_value": "not_applicable", "therapielinie_value": "not_applicable", "ctgov_number": null, "eudract_number": null, "general_contact_email": "martin.eichler@ukdd.de", "general_contact_phone": "+49 351-45819057", "hauptpruefer_dd_name": "Dr. Martin Eichler", "description_laie_de": "In Zusammenarbeit mit der Arbeitsgruppe Lebensqualit\u00e4t (Quality of Life Group) der Euro-p\u00e4ischen Organisation zur Erforschung der Krebsbehandlung (EORTC) und dem Niederl\u00e4n-dischen Institut zur Behandlung von Krebs (Netherlands Cancer Institute) m\u00f6chten wir un-tersuchen, wie sich die gesundheitsbezogene Lebensqualit\u00e4t von Menschen mit seltenen Krebserkrankungen am besten erfassten l\u00e4sst. H\u00e4ufig existieren f\u00fcr diese Erkrankungen noch keine zielgenauen Frageb\u00f6gen, die die spezifischen Probleme gut erfassen k\u00f6nnen. \r\n\r\nInternational werden 500 Patientinnen und Patienten an der Studie teilnehmen. Am Uni-versit\u00e4tsklinikum Dresden m\u00f6chten wir 15 Patientinnen und Patienten als Teilnehmende gewinnen.", "description_laie_en": "In collaboration with the Quality of Life Group of the European Organization for Research on Cancer Treatment (EORTC) and the Netherlands Cancer Institute, we would like to investigate how the health-related quality of life of people with rare cancers can best be assessed. Often there are no specific questionnaires for these diseases that can capture the specific problems well. \r\n\r\nInternationally, 500 patients will take part in the study. At Dresden University Hospital, we would like to recruit 15 patients as participants.", "description_expert_de": "Siehe den englischen Text.", "description_expert_en": "This projects\u2019 overarching goal is to improve HRQoL measuring practices for individuals with solid rare cancer diagnoses. Due to the diversity of tumours, therapies and patient experiences, it will be hard to develop a single HRQoL score for all rare malignancies. Understanding these variations is crucial when developing an HRQoL measuring technique. Such a measurement strategy will ensure that future research and clinical practice capture the most important outcomes to patients with rare cancer.", "rechtsgrundlage_value": "BO", "phase_amg_value": null, "main_cat_id": 6, "sub_cat_id": 37 }