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Unmet Needs in Information, Access to Optimal Care and Treatment and Research in NETs

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.

INCA White Paper on Unmet Needs in the Global Patient Community (click here to download the White Paper in 8 languages) and the full set of infographics and motion graphics illustrating its results are now available in 8 languages: EnglishChinese (Mandarin), German, French, Japanese, Italian, Russian and Spanish.

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.