About
medical research
Research plays an important role in improving the lives of people affected by neuroendocrine cancer. It helps us to understand why neuroendocrine cancers develop, improve diagnosis and care, develop new treatments, reduce side effects and improve quality of life.
Research can take many different forms – laboratory studies, analysis of health data, and research involving people, including clinical trials.
Whether you are considering taking part in research, supporting someone with neuroendocrine cancer, or simply want to understand more, this guide explains how medical research works, why it matters and how you can get involved.
What is research?
Research is the process of finding answers to important questions through careful study and investigation.
In healthcare, research helps us:
- Understand diseases better
- Improve treatments
- Develop new medicines
- Improve quality of life
- Improve healthcare services
- Prevent illness
- Identify the best ways to provide support
Research is much more than testing new drugs. It can involve surveys, interviews, analysing health data, laboratory work, scans, blood tests and studying patient experiences.
Watch our video: Neuroendocrine cancer clinical trials &research: The importance of the patient’sperspective:
Why research matters
Every advance in neuroendocrine cancer care has happened because of research.
Research has helped develop:
- Improved imaging scans
- Peptide receptor radionuclide therapy (PRRT) / radioligand therapy (RLT)
- Somatostatin analogue treatments
- Better surgical techniques
- Improved symptom management
- More personalised treatment approaches
Research provides the evidence needed to improve care now and in the future.
Watch our video: Neuroendocrine cancer clinical trials & research: The importance of the patient’s perspective:
Patient involvement in clinical trials and research is essential for advancing neuroendocrine cancer breakthroughs. By actively participating in trial design, patients influence research priorities, provide practical insights, and advocate for their needs, driving advancements and ensuring their inclusion in the process.
Taking part in research, by Leanne
Leanne was diagnosed with neuroendocrine cancer in 2019, facing tumours in her rectum, liver and thyroid. Her treatment journey includes PRRT and the advanced selective internal radiation therapy (SIRT) therapy using holmium, as part of a clinical trial.
Read more about Leanne's story
Types of research
Research takes many different forms. Each type answers different questions and contributes to improving care.
Discovery research (basic science)
This research takes place mainly in laboratories. Researchers study:
- Cancer cells
- Genes
- Hormones
- Proteins
- The immune system
Why is discovery research important?
It helps scientists understand:
- Why neuroendocrine cancers develop
- How tumours behave
- Why some cancers grow faster than others
- Which weaknesses in cancer cells could be targeted by new treatments
Translational research
Translational research turns scientific discoveries into practical benefits for patients.
Often described as moving research “from the laboratory bench to the patient’s bedside”.
Examples:
- Developing new biomarkers
- Personalised medicine approaches
- New imaging techniques
- New targeted therapies
Why is translational research important?
It helps ensure discoveries made in laboratories become real-world improvements in healthcare.
Clinical research
Clinical research involves people. It studies:
- New medicines
- Existing treatments used in different ways
- Surgical techniques
- Imaging tests
- Supportive care interventions
Why is clinical research important?
Clinical research helps determine whether treatments are safe, effective and beneficial. Clinical trials are one type of clinical research.
Early detection and diagnosis research
Researchers are working to find neuroendocrine cancers earlier and more accurately.
Research includes:
- New blood tests
- Biomarkers
- Artificial intelligence (AI)
- Advanced imaging techniques
- Genetic testing
Why is early detection and diagnosis research important?
Earlier diagnosis can improve treatment options and outcomes.
Observational research
Researchers observe what happens in everyday healthcare without changing treatment.
Examples include:
- Reviewing medical records
- Patient registries
- Long-term follow-up studies
Why is observational research important?
It helps identify trends and factors that affect patient outcomes.
Public health research
This research looks at health issues affecting large populations.
Examples include studying:
- Smoking
- Diet
- Exercise
- Environmental factors
- Health inequalities
Why is public health research important?
It helps improve health and healthcare across communities.
Qualitative research
Qualitative research explores people’s experiences, views and opinions. It may involve:
- Interviews
- Focus groups
- Surveys
- Discussion groups
Why is qualitative research important?
Understanding patient experiences helps improve services and support.
Psychological and quality of life research
This research focuses on emotional wellbeing and daily life. Areas studied include:
- Anxiety
- Depression
- Fatigue
- Fear of progression
- Quality of life
- Living with uncertainty
Why is psychological and quality of life research important?
Living well is just as important as living longer.
Genetic and biological research
Researchers analyse:
- Blood samples
- Tissue samples
- Tumour samples
Why is genetic and biological research important?
It helps researchers understand:
- Genetics
- Disease behaviour
- Treatment response
- Potential new treatment targets
Neuroendocrine cancer research
Research in neuroendocrine cancer currently focuses on several important areas.
- Earlier diagnosis: Finding ways to reduce delays and diagnose patients sooner.
- Understanding tumour behaviour: Understanding why some tumours remain stable while others become aggressive.
- Precision medicine: Matching treatments to the biology of each person’s tumour.
- New treatments, including:
- Targeted therapies
- Immunotherapy
- Radioligand therapy
- Cancer vaccines
- Chimeric antigen receptor T-cell (CAR-T) therapies
- Improving quality of life: Research into fatigue, symptom control, psychological wellbeing and survivorship.
- Improving clinical pathways: Understanding which treatments work best and in what order.
Watch our video: Understanding Neuroendocrine Cancer Research:
The research questions that matter most
James Lind Alliance neuroendocrine cancer research priorities
People living with neuroendocrine cancer, carers and healthcare professionals worked together through the James Lind Alliance Priority Setting Partnership to identify the most important unanswered research questions.
These priorities help researchers and funders focus on the issues that matter most to the neuroendocrine cancer community.
Top 10 research priorities identified
- What causes some neuroendocrine tumours to become more aggressive?
- What biological mechanisms drive tumour growth, spread and progression?
- How can treatment be better personalised?
- Which new therapies are most effective?
Including:
- Immunotherapy
- CAR-T therapy
- Targeted treatments
- Cancer vaccines
- How can the psychological impact of neuroendocrine cancer be better managed?
- What is the best order for treatments to be given?
- How can technologies such as AI and liquid biopsy improve diagnosis?
- What causes symptoms such as fatigue, and why do symptoms vary?
- What are the long-term effects and benefits of treatments such as PRRT and somatostatin analogues?
- Why do some low-grade tumours behave aggressively?
Why these priorities matter
For the first time, neuroendocrine cancer patients, carers and healthcare professionals have developed a shared roadmap for future research. These priorities will help guide funding decisions and future studies.
Clinical trials explained
A clinical trial is a research study involving people. Clinical trials help researchers determine whether:
- A new treatment works
- A treatment is safe
- A new approach is better than current care
- Side effects can be reduced
- Quality of life can be improved
Every treatment available today became available because of clinical trials.
Clinical trial phases
All clinical trials in the UK must meet strict regulations to protect participants.
Taking part in research
Not all research involves taking medicines or taking part in a clinical trial. You may be invited to:
- Complete questionnaires
- Share your experiences
- Take part in interviews
- Join focus groups
- Donate blood samples
- Donate tissue samples
- Join observational studies
Every participation contributes vital information to improve future care.
Finding a clinical trial
If you would like to explore clinical trial opportunities, the first step is to speak with your cancer specialist, clinical nurse specialist (CNS), or oncology team.
Your healthcare team can:
- Help identify trials that may be suitable for your diagnosis
- Check whether you meet the trial eligibility criteria
- Explain the possible benefits and risks
- Arrange referrals to trial centres if appropriate
Most clinical trials require a referral from your healthcare team.
Finding clinical trials in the UK
If you are interested in taking part in a clinical trial, there are several services and databases that can help you find studies that may be relevant to you.
Our Find a clinical trial page includes information about services that can help you look for suitable trials, as well as UK and international clinical trial databases.
Find a clinical trial
Your rights as a research participant
You have the right to:
- Receive clear information
- Ask questions
- Take time to decide
- Give informed consent
- Withdraw at any time
- Have your information kept confidential
Choosing not to take part will not affect your routine medical care.
Biobanking and tissue donation
Biobanking means storing blood, tissue or tumour samples for future research. These samples help researchers:
- Understand disease biology
- Discover biomarkers
- Develop new treatments
- Improve diagnosis
You can choose whether you would like your samples to be stored and used.
Frequently asked questions
Are clinical trials safe?
Clinical trials are carefully regulated and reviewed by ethics committees, with measures in place to protect participants and monitor their safety throughout the trial. However, taking part can involve risks, including known or unexpected side effects, and these should be explained to you before you decide whether to take part.
Can I leave a study?
Yes. Participation is voluntary and you can withdraw at any time.
Will I definitely receive a new treatment?
No. Studies may compare a new treatment with the standard treatment or placebo (an inactive treatment used to help researchers compare results). This means you may not receive the new treatment being studied.
Will taking part help future patients?
Yes. Research participation helps improve understanding and treatment for future generations.
Questions for your appointments
Consider asking your healthcare team the following questions.
About research
- Are there any research studies suitable for me?
- How could taking part help future patients?
- What would participation involve?
About clinical trials
- Am I eligible for any trials?
- What are the benefits and risks?
- How often would I need appointments?
- Who would oversee my care?
- Could I withdraw if I change my mind?
About support
- Are travel expenses covered?
- What support services are available?
- Who do I contact if I have questions?
How we can help
Our Helpline is here if you have questions about clinical trials or would like further information and support.
Our team can:
- Explain clinical trial terminology
- Provide information about neuroendocrine cancers
- Signpost you to additional support services
Find out more about our helpline
Glossary
Biobank
A collection of blood or tissue samples stored for research.
Biomarker
A biological sign that helps diagnose disease or predict treatment response.
Clinical trial
A research study involving people that tests treatments or healthcare approaches.
Informed consent
The process of understanding research and agreeing to take part.
Placebo
An inactive treatment used in some clinical studies.
PRRT (peptide receptor radionuclide therapy) / radioligand therapy (RLT)
A targeted treatment that delivers radiation directly to neuroendocrine cancer cells.
Translational research
Research that turns laboratory discoveries into treatments and improvements in patient care.
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