NCUK Research Projects
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.
Examples of NCUK’s research projects
1. We understand that being a Neuroendocrine Cancer patient often involves intermittent visits to hospital. But most of the time you are at home, managing your condition in the community. In 2017 we started a project looking at the support needs of Neuroendocrine Cancer patients and their families in the community, outside of the hospital setting. Several focus groups were held to discuss what the issues are and to give us an idea of what questions we should be asking. We presented these in a poster at UKINETs in December 2017 and won best poster in the category ‘Living With and Beyond NETs’. This year we invited Neuroendocrine Cancer patients to take part in an online survey about support, the feedback has been absolutely invaluable and we are very grateful to anyone who took the time to complete the survey or take part in the focus group.
2. ‘MIND the Gap’ – this is a 2-year project, undertaken with our psychotherapy service. The main aim is to raise awareness and to fill the gap (or huge void for some) in terms of the reality of cancer long term. This can be an anxiety-ridden place, and we have to help patients carry, not only the physical, but also the psychological burden of disease. There are 9 major themes within this project, ranging from living with uncertainty to managing communication with your medical team.
3. Development of an EORTC Quality of Life questionnaire for patients with Pancreatic Neuroendocrine Tumours. This international study aims to create a Quality of Life questionnaire for patients with Pancreatic Neuroendocrine Tumours (pNETs). This study is funded by the EORTC, Neuroendocrine Cancer UK and Pfizer. The lead site for this project is Hampshire Hospitals, Professor John Ramage. There are 7 UK sites set up and 7 International sites.
5. PHE Partnership Project – this has been a huge project for us and work has finished on the initial interrogation of Public Health England Dataset on Neuroendocrine Cancer patients, along with registries in Northern Ireland, Wales and Scotland. We are hugely grateful to all the contributors from each registry, and to our medical working group for their commitment to this project. To date UK information about incidence, prevalence and survival of persons with Neuroendocrine Neoplasms (NENs) has been lacking. From our completed work, this information is now available for the first time and the paper has been published.
Up and running in 2020 is a continuation of this project study that is being led by an NIHR funded Clinical Research Fellow Ben White. Other collaborators include:
- Analysts including QA: Gincy George KCL
- Project advisors: Mieke van Hemelrijck
- Project lead: Neuroendocrine Cancer UK / Catherine Bouvier, Dr Benjamin White
- Clinical lead: John Ramage (Chair Steering Committee)
- Health economics lead: Ruben Mujica-Mota, Exeter University
- Analytical programme manager:
- Committee members: Gincy George, Mieke van Hemelrijck, Eva Gamper, Rajaventhan Srirajaskanthan, Mohid Khan, Denis Talbot, Juan Valle, Kwok Wong, Catherine Bouvier, Brian Rous, Nicholas S Reed, Tracey Genus
This is a continuation study from an initial UK wide ( first of its kind) looking at the incidence and prevalence of Neuroendocrine Neoplasms to “Determine mode of presentation, route to diagnosis, updated incidence, prevalence and survival of patients with Neuroendocrine Neoplasia, calculating total costs of care.”
NCRI Clinical Studies Groups (CSGs)
The NCRI Clinical Studies Groups (CSGs) have been in existence for more than 10 years, and are a central part of the UK’s cancer research infrastructure. There are 18 CSGs that bring together clinicians, scientists, statisticians and lay representatives to coordinate development of a strategic portfolio of trials within their field. All CSGs interact with clinical research networks, funders and researchers to develop studies aimed at improving outcomes for patients. In addition to the 18 CSGs, there are also 3 Advisory Groups that provide ad hoc advice to the CSGs, and others, on developing clinical trials. NCUK sit on the Neuroendocrine NCRI sub group committee.
NCUK are an NIHR non-commercial Partner
At the end of 2019 the International Neuroendocrine Cancer Alliance (INCA) invited Neuroendocrine Cancer patients and healthcare professionals to scan the access challenges to optimal care for Neuroendocrine Cancer patients.
Neuroendocrine Cancer UK is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer.
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