INCA White Paper on Unmet Needs in the Global Patient Community and the full set of infographics and motion graphics illustrating its results are now available in 7 languages: Chinese (Mandarin), German, French, Japanese, Italian, Russian and Spanish.
In 2017, INCA inspired and lead the effort to assess unmet needs in the Neuroendocrine Tumour (NET) community globally. These needs were identified via an online survey among NET patients and their caregivers, patient advocate leaders, and healthcare professionals in 26 countries. In-depth interviews with ten clinical leaders and nine patient advocate leaders from around the globe further enriched the survey results.The assessment conducted by INCA identified significant unmet needs: in the provision of information to patients, and in access to the latest diagnostics, essential services and multidisciplinary care. A lack of patient involvement in research strategies and clinical trials also transpired.
This assessment was supported through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organization and INCA member, and the translations of all unmet needs materials were funded through the NETRF grant, as well as grants from Novartis, Ipsen and Pfizer.
Two abstracts on unmet needs in the global NETs patient community based on the INCA survey have been presented at the recent 2018 North American Neuroendocrine Tumour Society (NANETs) Annual Multidisciplinary NET Disease Symposium, October 4-6, in Seattle, Washington, and at the ESMO 2018 Congress, 19-23 October, in Munich (Best Poster Award). An oral presentation on “Unmet needs in the global NETs patient community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals” will be part of the program of the Asia Pacific Neuroendocrine Tumour Society (APNETs) 2018 Conference, November 9-11, Melbourne, Australia.
Simone Leyden, INCA President shared: “INCA is committed to being the global voice of NET patients, and we are excited to be able to relate the key messages around unmet needs in so many languages and at the key medical forums. This effort will open the door to new territories and communities around the globe, with whom we are looking forward to greater collaboration and collective action to address the many challenges NET patients face, in securing a timely diagnosis and accessing optimal treatment and care.”