Our vision is of a world in which people know how to recognise, diagnose, treat, care for, and ultimately, cure patients with Neuroendocrine Cancer.
The NET Patient Foundation undertakes in-house research as well as supporting external clinical trials. We recognise the patient voice in research is vital. This voice is a hugely underused expertise in research and we thank every one who has contributed to any of the research that we have undertaken or supported. Advocacy groups are working globally to increase the patient contribution in research.
- Tumour biology – formation, structure and genetics of tumour cells to try and identify cause, new and more effective treatments
- Research into the emotional impact of a diagnosis and living with your disease
- Effects of long term treatments
- Research into treatments for high grade disease.
However, we need to have a clear strategy in place and there are 3 key activities that need to be undertaken in order to produce a research strategy for NETs, NECs, MEN, ACC and MCC:
- Survey of patient need and perceptions of priorities in NET research
- Survey of researchers perceptions of priorities in NET research
- Development of a research network for NETS.
The outcomes of a clear research strategy should enable us to:
- Understand the needs of the patient community with regard to research
- Gain a complete understanding of the research landscape in the UK
- Understand whether or not current research is in line with patient expectation
- Encourage researchers to focus on projects with greater impact on patient benefit with regard to NETs, NECs, MEN, ACC and MCC
- Potentially set up an independent research network/organisation/charity to act as an independent decision-maker with regard to research focus.