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Epidemiology of Complications After Solid Organ Transplantation - EpCOT Study

The 'EpCOT Study' is looking into health issues, particularly cancer, that can happen after someone has received an organ transplant in the UK. Unfortunately, cancer is still a big problem for transplant patients, and its impact is growing. This study aims to use existing health records to get a clearer picture of how cancer affects people who have had a kidney, liver, or heart transplant. By combining this information, researchers hope to understand the different types of cancer that occur, why they happen, and how they affect patients over time. This will help doctors give better advice and care to patients in the future, improving their long-term health after a life-saving transplant.

At a glance

Status
Active not recruiting
Sponsor
University Hospital Birmingham NHS Foundation Trust
Enrolment target
85,410
Start
01 Jan 1985
Estimated completion
01 Mar 2029

What is this study about?

When someone has an organ transplant, like a kidney, liver, or heart transplant, they need to take medicines to stop their body from rejecting the new organ. These medicines keep the immune system from attacking the transplant, but they can also make people more likely to get certain health problems, including cancer. In fact, cancer is becoming a bigger concern for transplant patients.

This study, called 'EpCOT', is trying to understand more about these health issues, especially cancer, in people who have had a transplant in the UK. The researchers aren't doing new tests or giving new medicines. Instead, they are carefully looking at existing medical records and information that is already collected by different health organisations. By linking these records together, they can follow the health journey of many transplant patients, from when they had their transplant to how they are doing now.

The main goal is to get a much clearer picture of how often cancer occurs in transplant patients, what types of cancer they get, and how it affects them. They also want to understand other health complications that transplant patients might face. This information is really important because it will help doctors in the UK improve the care and advice they give to patients after a transplant. For example, knowing more about cancer risks can help doctors decide on the best ways to screen for it and manage it, ultimately helping patients live healthier and longer lives.

Key takeaways

  • The study explores health problems, especially cancer, after organ transplants.
  • It uses existing, anonymised patient records from transplants done in England.
  • No new tests or medicines are involved for patients.
  • The goal is to improve care and advice for future transplant patients.
  • Your privacy is protected as data is anonymised.
  • You have the option to opt out if you don't want your data included.

Who may be eligible?

This study is looking at information from people who have already had a solid organ transplant (like a kidney, liver, or heart) in England. It doesn't involve any new treatments or procedures.

To be included, you must have received your organ transplant in England.

If your transplant was in Scotland, Wales, or Northern Ireland, your data will not be part of this specific study. Also, if you are a living transplant recipient and you do not wish for your anonymised (privacy-protected) health records to be linked and studied, you can choose to opt out. You would need to contact the study lead directly to do this.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

  1. Did you receive a solid organ transplant (e.g., kidney, liver, heart)?
  2. Was your transplant performed in England?
  3. Are you comfortable with your anonymised health records being used for research?
  4. You do not need to do anything for this study, as it uses existing data.
Answer every question to see your result.

What does participation involve?

This study doesn't involve you actively doing anything, like making appointments or taking new medicines. The researchers will be using information about your health that is already stored in existing medical records and databases. This means there are no visits, assessments, or follow-up appointments for you to attend, and no medicines to take. The study is simply looking at already collected data to learn more about health after transplants, particularly cancer.

Potential risks and benefits

Since this study only uses existing, anonymised medical records, there are no direct physical risks to you. Your personal information will be protected. The potential benefits are for future transplant patients, as the findings will help doctors better understand and manage health complications, especially cancer, after transplants. This could lead to improved care and advice for future patients. You have the right to withdraw your anonymised data from being included in this study, should you choose to decline participation.

Locations (2)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.
  • University of Birmingham, Edgbaston
    Verified postcode
    Birmingham, United Kingdom
  • University of Birmingham
    Verified postcode
    Birmingham, United Kingdom

Common questions

What kind of transplant organs are included in this study?

This study looks at people who have received solid organ transplants, such as kidney, liver, or heart transplants.

Will I have to do anything if my information is used?

No, you don't need to do anything. The study uses existing medical records, so there are no appointments or actions required from you.

How will my personal information be kept private?

The information used in the study will be anonymised, meaning any details that could identify you personally will be removed or protected to ensure your privacy.

Why is this study important for people who have had transplants?

Understanding more about health issues like cancer after transplants helps doctors provide better care, advice, and screenings for future patients, improving their long-term health.

Can I choose not to have my information included?

Yes, if you are a living transplant recipient, you can choose to opt out of having your anonymised records used in this study. You would need to contact the study lead directly.

How to find out more

Always speak to your GP or specialist before deciding to take part in a study.

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