国际神经内分泌瘤未满足需求-2017-11-08-UnmetNeeds_in_the_global_NETs_community.pdfVIP

Unmet needs in the global NETs patient community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals CONTRIBUTORS: Bouvier, C; Caplin, M; Conroy, S; Davies, P; Dureja, S; Falconi, M; Ferolla, P; Fisher, G; Goldstein, G; Hicks, R; Hollander, R; Kolarova, T; Lawrence, B; Leyden, S; Majima, Y; Metz, D; O‟Toole, D; Ruszniewski, P; Wiedenmann, B. Abstract The International Neuroendocrine Cancer Alliance (INCA) is a global alliance made up of 20 patient advocacy and research groups in 17 countries from Asia, Asia Pacific, Europe, and North America. Itswork is focused on supporting country member organisations and, through them, supporting neuroendocrine cancer patients (and their families) and advocating on their behalf to improve diagnosis, care and research. The assessment INCA has conducted has identified important unmet needs in the provision of information to patients at diagnosis; in essential services and multidisciplinary care; in access to innovative diagnostics and treatment; and a lack of patient involvement in research strategies and clinical trials. While it is not uncommon for some of these gaps to exist for patients with other forms of cancer, they are particularly vexing for neuroendocrine patients for several reasons including:  late diagnosis: as noted below, NET patients are typically misdiagnosed (and often inappropriately treated) for years. Once diagnosed, their tumors have often metastasized making treatment more challenging and options more limited and difficult.  Neuroendocrine tumors (NETS) can be quite heterogeneous. They can occur in a wide variety of sites. They can be quite in