NET Patient Foundation attends ENETs 16th Annual Conference

Catherine Bouvier, NPF’s Chief Executive, attended the European Neuroendocrine Tumor Society 16th Annual Conference which was held in Barcelona on 6th-8th March. 

ENETs this year had a real flavour of change. The advocacy issues were championed by both Pharma and ENETs. The work of the NPF was formally recognised and the engagement of the audience listening to the wonderful Sally Jenkins talk about her experiences, was palpable. Over 600 people attended the session exploring Quality of Life.

There were other really valuable topics discussed, one of which presented by Professor Ramage. He was discussing the current tools used to collect Quality of Life data in clinical trials, and how we can and should improve upon this. How we should be looking seriously at Patient Reported Experience Measures and outcomes measures in clinical trials. Staying on this topic INCA presented work on the importance of bringing patients in on the design of clinical trials to ensure the outcomes would be relevant and useful. We currently look at time to disease progression as one of our end points in clinical trials. Would we not be better serving our patients to look at time to deteriorating Quality of Life?

Other buzz topics were money and Brexit- no surprise here. The financial topic was a pertinent one however as the cost of drugs is increasing, as is patient survival. How do we maintain this?

Also there were conversations around financial toxicity for our community. What is the cost of living with a NET?

We heard about new research on optimal scanning techniques and suggestions of doing both an FDG and a Gallium PET scan. We have work to do to obtain Gallium for all in the UK first!

The 3 hour nurse symposium was nearly a full house, and our very own Kym Winter, who runs our counselling service, presented our new MIND The Gap Campaign. This will be launched next month. There were also presentations on genetics in NETs, exercise regimes for our patients and we even talked about sex.

Throughout the meeting there was talk of support, digital health, health literacy, the urgency of more clinical trials, the unmet needs of certain NET types. 

The closing of ENETs was a firework display of information about where we are now and where we need to be going! It was a little mind blowing but it shows the determination of the community!