biostudies-literatureUnknown146(5)Leyden SNeuroendocrine Tumor Research FoundationDue to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33-37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. AdditInternational journal of cancer1316-1323https://www.ebi.ac.uk/biostudies/studies/S-EPMC7004101biostudies-literatureUnmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.PMC7004101Wiedenmann BCaplin MHicks RJHollander RGoldstein GO'Toole DInternational Neuroendocrine Cancer Alliance (INCA)Fisher GFalconi MDavies PKolarova TMetz DCMajima YFerolla PBouvier CLeyden SDureja SLawrence BRuszniewski PConroy SfalseUnmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33-37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Addit2020-01-01T00:00:00Z2020 Mar2025-04-18T17:59:22.927Z2020-05-22T09:54:41ZS-EPMC70041013150960810.1002/ijc.32678