National Study of Adrenal Tumours
This national study is collecting information from many people in the UK and Ireland who have rare growths in their adrenal glands. These include conditions called pheochromocytoma, paraganglioma, and adrenocortical cancer. The main goal is to learn more about how these conditions affect people over time, especially how long people live with them. By bringing together information from many patients, researchers hope to find better ways to diagnose and manage these rare growths. All the information collected will be kept private and secure. Your local doctor will ask if you want to take part, and choosing not to won't affect your medical care.
At a glance
What is this study about?
This is a big study happening across the UK and Ireland that focuses on unusual growths found in a small gland above your kidneys, called the adrenal gland. These growths can sometimes be cancerous, like adrenocortical cancer, or they can produce too many hormones, like pheochromocytoma and paraganglioma. Because these conditions are rare, it's hard for doctors to get enough information to fully understand them.
The study aims to gather lots of information about people with these conditions. Researchers want to understand things like how these growths are diagnosed, how they are treated, and how these treatments affect people over time. By looking at information from many patients all together, they hope to get a clearer picture of these rare diseases. This knowledge could help doctors make better decisions about care in the future and potentially improve how long people live with these conditions.
All the information collected for this study will be treated with great care and kept completely private in a secure system. Your local specialist or nurse will talk to you about joining the study. It's entirely your choice whether to take part or not, and your decision will not change the excellent care you receive from your doctors and healthcare team.
Key takeaways
- This study collects information on rare adrenal growths.
- It aims to improve understanding of diagnosis and treatment.
- Participation is entirely optional and won't affect your medical care.
- Your data will be kept confidential and secure.
- No extra appointments or tests are needed from you.
- The study helps develop better care for future patients.
Who may be eligible?
To be part of this study, you generally need to be an adult (18 years or older) and have received a clear diagnosis of a pheochromocytoma, paraganglioma, or an adrenal growth. This diagnosis would have been confirmed through medical tests, such as tissue samples (histology), blood or urine tests that look at hormone levels, or imaging scans like CT or MRI. Even if you haven't had one of these specific growths but have a known genetic change that makes you more likely to develop them, you might also be able to join.
We also include information from patients who have passed away before the study started, as long as they had one of these confirmed diagnoses. This historical information is very useful for researchers.
However, if an adult patient is alive but unable to understand and agree to take part in the study, they cannot be included. Also, people who haven't had a confirmed diagnosis of these specific adrenal growths won't be able to join the study.
- I am 18 years old or older.
- I have been diagnosed with pheochromocytoma, paraganglioma, or an adrenal tumour.
- My diagnosis was confirmed by medical tests (like tissue samples, blood/urine tests, or scans).
- I understand and am willing to give my permission for my medical information to be used.
- I am in the UK or Ireland.
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
If you decide to take part in this study, you won't need to do anything extra beyond your usual medical care. The study is mainly about collecting information from your existing medical records. This means there won't be any extra hospital visits, new tests, or different medications involved because of the study. The research team will look at details about your diagnosis, the treatments you've received, and how your condition has progressed over time. All the information will come from data already collected during your regular appointments and treatments. There isn't a specific end date to your participation, as the study might continue to collect information over a longer period to see how treatments affect patients in the long term, but it won't require any active involvement from you.
Potential risks and benefits
Locations (1)
- Cambridge NHSCambridge, United Kingdom
Common questions
What are 'adrenal tumours'?
Adrenal tumours are growths that form in your adrenal glands, which are small glands located on top of your kidneys. They can sometimes affect hormone production or be cancerous.
Will taking part in this study change my hospital appointments or treatments?
No. Taking part in this study will not change any of your current or future hospital appointments, treatments, or the care you receive from your doctors.
Who will see my personal information?
Your personal information will be kept confidential and stored securely. Only authorised researchers involved in the study will have access to your anonymised or coded data, ensuring your privacy.
Can I decide not to join the study?
Yes, it is entirely your choice. If you decide not to join, or if you change your mind later, it will not affect your medical care in any way.
How will my information help?
By gathering information from many patients, researchers hope to better understand these rare conditions, which could lead to improved ways of diagnosing and treating them for people in the future.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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