Boosting care and knowledge about hereditary cancer: European Reference Network on Genetic Tumour Risk Syndromes

• Type: Article in International Scientific Journal
• Date: 2019

Authors

Vos, JR (Author) Other; Giepmans, L (Author) Other; Roehl, C (Author) Other; Geverink, N (Author) Other; Hoogerbrugge, N (Author) Other; Ligtenberg, M (Author) Other; Kets, M (Author) Other; Sijmons, R (Author) Other; Evans, G (Author) Other; Woodward, E (Author) Other; Tischkowitz, M (Author) Other; Maher, E (Author) Other; Steinke Lange, V (Author) Other; Holinski Feder, E (Author) Other; Frebourg, T (Author) Other; Houdayer, C (Author) Other; Ferner, RE (Author) Other; Lubinski, J (Author) Other; Ertmanska, K (Author) Other; Bajalica Lagercrantz, SB (Author) Other; Tham, E (Author) Other; Guillermo, IB (Author) Other; Capella, G (Author) Other; Vidal, JB (Author) Other; Lazaro, C (Author) Other; Balmana, J (Author) Other; Bours, V (Author) Other; Legius, E (Author) Other; Wolkenstein, P (Author) Other; Melegh, B (Author) Other; Oliveira, C (Author) Other; Manuel R Teixeira (Author) ICBAS; Poppe, B (Author) Other; Claes, K (Author) Other; Hernandez, HS (Author) Other; Aretz, S (Author) Other; Spier, I (Author) Other; Oostenbrink, R (Author) Other; Krajc, M (Author) Other; Blatnik, A (Author) Other; Schrock, E (Author) Other; Peltonen, S (Author) Other; Hietala, M (Author) Other

Journal

Title: Familial Cancer

Vol. 18

Pages: 281-284

ISSN: 1389-9600

Publisher: Springer Nature

Indexing

ISI Web of Knowledge - 7 Citations

Other information

Authenticus ID: P-00Q-58S

DOI: 10.1007/s10689-018-0110-6

Abstract (EN): Approximately 27-36million patients in Europe have one of the similar to 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.

Language: English

Type (Professor's evaluation): Scientific

No. of pages: 4