Research & You

Sep 22, 2021

Undertaking research – whether through clinical trials or gathering data – is vital to improving both care and quality of life for those living with Neuroendocrine Cancer.

At NCUK we are proud to have driven or been involved in a number of research projects both Nationally and Internationally, ensuring that the patient perspective, your voice, is heard. Thank you to each and every one of you who completes a questionnaire or responds to a survey.

We will continue to drive forward, collaborate and be involved – it is SO important to be able to share your views – to bring your voice to a platform where it can be listened to and acted on.

It is also important to us to ensure our community is aware of what research is happening – our UK and Global trials page, lists recent & current clinical trials and our Publications page shares published articles detailing work undertaken by and/or supported by NCUK

Neuroendocrine Cancer UK 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 everyone 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.

We currently have four key areas of research focus:

  • Tumour biology : formation, structure and genetics of tumour cells to try and identify a 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.

We do not recruit for trials but we will share information about studies so that those living with Neuroendocrine Cancer can see what might be available. 

This can help to inform discussions with their clinical care team about next steps and identify willingness and suitability to get involved.

For example : 

Currently recruiting : the phase III clinical trial COMPETE : for patients with grade 1 and grade 2 neuroendocrine tumors of gastro-enteric or pancreatic origin (G1 and G2 GEP-NETs). 

Further information can be found on https://clinicaltrials.gov/ct2/show/NCT03049189 

and 

Coming Soon : a phase III clinical trial : COMPOSE : for patients with high G2 and G3 GEP-NETs. Further information can be found on https://clinicaltrials.gov/ct2/show/NCT04919226 

or visit our UK and Global trials page here

Publications : 

Published articles about research undertaken and/or supported by Neuroendocrine Cancer UK – can be found and read here.

If you would like to get more involved or share your experience of being involved in research, whether through clinical trial or other – let us know or email hello@nc-uk.org