INCA marked NET Cancer Day at prIME Oncology Masterclass on NETs with over 200 physicians from around Europe and beyond. The prIMEMasterclass in Neuroendocrine Tumors was held in Amsterdam, Netherlands on 10/11/2017-11/11/2017. INCA Executive Director, Teodora Kolarova, shared INCA experience in patient advocacy and presented some insights from the White Paper 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.
INCA White Paper is based on an online survey among NET patients and their caregivers, patient advocate leaders, and healthcare professionals in 26 countries, which was further enriched through in-depth interviews with 10 clinical leaders and nine patient advocate leaders from around the globe.
The assessment conducted by INCA identified significant unmet needs: in the provision of information to patients at diagnosis, and access to the latest diagnostics and to essential services and multidisciplinary care. A lack of patient involvement in research strategies and clinical trials also transpired.