The INCA/ENETs Symposium took place on 26 February as part of the 18th ENETS Annual Conference which took place virtually. The Symposium speakers showcased best practices and discussed strategies how to improve patient impact on NET research and the time to NET diagnosis.
The scene was set with a presentation on why patient-led/driven research is instrumental, delivered by INCA Executive Director, Teodora Kolarova. The topic was further explored with best practice examples of patient involvement in research. Mark McDonnell, Chairperson of NET Patient Network Ireland and INCA Treasurer, presented SCAN as an example of truly successful global patient-led and patient-generated evidence. Jackie Herman, President and Director of Treatment Access & Health Policy of the Canadian Neuroendocrine Tumour Society and INCA Board Member, showcased the INCA Boot Camp for Research Advocates training program, which had helped a unique pool of global patient leaders to further excel their knowledge of the drug development process and evidence-based advocacy.
The NET Research Foundation (NETRF)/Broad Institute NET Cell Line Project, presented by Elyse Gellerman, Chief Executive Officer of NETRF and INCA Access Committee Member, showcased the productive collaboration between patients and healthcare professionals – making it possible for neuroendocrine tumor cell lines to be shared with any researcher, in any laboratory, anywhere in the world. The first part of the session was closed by Dr. Jaume Capdevila, who passionately recapped on the value of patient-driven research.
Dr. Sugandha Dureja, CNETS India Chair and Access Committee Member, introduced the challenges in early diagnosis of NETs as profiled by INCA’s global SCAN survey. Dr. Dureja outlined the difficulties and shared INCA’s future plans to facilitate healthcare professionals’ access to more practical and relevant knowledge about NETs.
Catherine Bouvier, Neuroendocrine Cancer UK CEO and INCA President profiled the barriers to early diagnosis, as identified by a recent UK survey analyzing the impact of misdiagnosis on healthcare systems and patients. The survey is part of a wider effort looking to bridge the gap and ultimately create a well-defined diagnostic and care pathway.
Simone Leyden, NeuroEndocrine Cancer Australia CEO and INCA Research Chair presented the first ever accredited online course on NETs for general practitioners in Australia and also outlined the Optimal Care Pathway for NETs project, which will ensure greater awareness and government support.
Prof. Dermot O’Toole expanded on the pivotal role patient engagement can play in accelerating time to NET diagnosis.
The symposium was moderated by INCA President, Catherine Bouvier, and ENETS Chair, Prof. Marianne Pavel. The clear determination of the NET patient and medical expert communities to work collaboratively to drive change and improve patient outcomes was once again asserted.