1. Boosting care and knowledge about hereditary cancer: European Reference Network on Genetic Tumour Risk Syndromes
- Author
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Vos, JR, Giepmans, L, Rohl, C, Geverink, N, Hoogerbrugge, N, Ligtenberg, M, Kets, M, Sijmons, R, Evans, G, Woodward, E, Tischkowitz, M, Maher, E, Steinke-Lange, V, Holinski-Feder, E, Frebourg, T, Houdayer, C, Ferner, RE, Lubinski, J, Ertmanska, K, Lagercrantz, SB, Tham, E, Guillermo, IB, Capella, G, Vidal, JB, Lazaro, C (Conxi), Balmana, J, Bours, V, Legius, E, Wolkenstein, P, Melegh, B, Oliveira, C, Teixeira, M, Poppe, B, Claes, K, Hernandez, HS, Aretz, AWM, Spier, I, Oostenbrink, Rianne, Krajc, M, Blatnik, A, Schrock, E, Peltonen, S, Hietala, M, Ern, G, Guided Treatment in Optimal Selected Cancer Patients (GUTS), Erasmus School of Health Policy & Management, Pediatrics, and Legius, Eric
- Subjects
0301 basic medicine ,Cancer Research ,Pediatrics ,Databases, Factual ,Colorectal cancer ,International Cooperation ,030105 genetics & heredity ,Medical Oncology ,GUIDELINES ,COLORECTAL-CANCER ,Tumours of the digestive tract Radboud Institute for Health Sciences [Radboudumc 14] ,0302 clinical medicine ,Epidemiology ,Medicine and Health Sciences ,Tumours of the digestive tract Radboud Institute for Molecular Life Sciences [Radboudumc 14] ,Registries ,Genetics (clinical) ,Syndrome ,Quality Improvement ,Women's cancers Radboud Institute for Health Sciences [Radboudumc 17] ,Rare diseases ,Europe ,Oncology ,030220 oncology & carcinogenesis ,Clinical Competence ,Hereditary diffuse gastric cancer ,medicine.medical_specialty ,Short Communication ,European Reference Network ,behavioral disciplines and activities ,Time-to-Treatment ,03 medical and health sciences ,All institutes and research themes of the Radboud University Medical Center ,Cross border health care ,SDG 3 - Good Health and Well-being ,Genetic ,Neoplastic Syndromes, Hereditary ,Genetics ,medicine ,Genetic predisposition ,Humans ,Genetic Predisposition to Disease ,Genetic Testing ,Neurofibromatosis ,Information Services ,business.industry ,Information Dissemination ,Remote Consultation ,Cancer ,medicine.disease ,PREVENTION ,Hereditary cancer ,Li–Fraumeni syndrome ,business ,Rare disease - Abstract
Approximately 27-36 million patients in Europe have one of the ~ 5.000-8.000 known rare diseases. These patients often do not receive the care they need or they have a substantial delay from diagnosis to treatment. In March 2017, twenty-four European Reference Networks (ERNs) were launched with the aim to improve the care for these patients through cross border healthcare, in a way that the medical knowledge and expertise travels across the borders, rather than the patients. It is expected that through the ERNs, European patients with a rare disease get access to expert care more often and more quickly, and that research and guideline development will be accelerated resulting in improved diagnostics and therapies. The ERN on Genetic Tumour Risk Syndromes (ERN GENTURIS) aims to improve the identification, genetic diagnostics, prevention of cancer, and treatment of European patients with a genetic predisposition for cancer. The ERN GENTURIS focuses on syndromes such as hereditary breast cancer, hereditary colorectal cancer and polyposis, neurofibromatosis and more rare syndromes e.g. PTEN Hamartoma Tumour Syndrome, Li Fraumeni Syndrome and hereditary diffuse gastric cancer. ispartof: Familial Cancer vol:18 issue:2 pages:281-284 ispartof: location:Netherlands status: published
- Published
- 2019