INCA White Paper on Unmet Needs

The INCA White Paper on Unmet Needs in the Global NETs Patient Community concludes that joint efforts should tackle the concerns about this neglected cancer and address the needs of the NET community. 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 and the NET medical societies around the globe have pledged to work together to implement solutions to the challenges and gaps identified.

This assessment was supported through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organization and INCA member, and the translation of the White Paper was funded through the NETRF grant, as well as grants from Novartis, Ipsen and Pfizer.