RecruitingOBSERVATIONAL

Liver Cancer Registry Platform

This project is creating a national registry in Germany for people diagnosed with two types of liver cancer: Hepatocellular Carcinoma (HCC) and Cholangiocarcinoma. Think of it like a secure database where important health information will be collected from many patients. The main goal is to gather detailed information on these cancers, including how they are diagnosed, the different treatments people receive, and how the diseases progress over time. Doctors will also collect information directly from patients about how they are feeling and their quality of life. This will help researchers and doctors understand these cancers much better. By looking at a large number of patients, they hope to identify common treatment paths, see how treatments are changing, and ultimately work towards improving care for future patients with these conditions.

At a glance

Status

Recruiting

Sponsor

iOMEDICO AG

Enrolment target

1,000

Start

09 Aug 2020

Estimated completion

01 Dec 2027

Hepatocellular Carcinoma (HCC)Cholangiocarcinoma

What is this study about?

Imagine a big, organised record-keeping system just for people in Germany who have been diagnosed with certain types of liver cancer, specifically Hepatocellular Carcinoma (HCC) or Cholangiocarcinoma. This project, called JADE, is setting up exactly that. It's not a new treatment trial, but rather a way to carefully watch and record what happens to many patients over time.

The main idea is to collect consistent information about these cancers, from when they are first diagnosed, through all the different treatments people receive, and how their health changes over a few years. This includes details about the cancer itself, other health conditions people might have, and the treatments like surgery, radiotherapy, or other medicines.

Crucially, this project also wants to understand how people are feeling. Participants will be asked questions about their quality of life – how their health affects their daily activities and well-being. By bringing all this information together from many hospitals across Germany, researchers hope to see patterns, understand which treatments are most common, and how cancer care for these conditions is evolving. This knowledge is vital for improving how these cancers are treated and for helping patients in the future.

Key takeaways

It's about collecting information on liver cancer patients in Germany.
It helps doctors understand HCC and Cholangiocarcinoma better.
No new treatments are given; your usual care continues.
You'll share information about your health and how you feel.
Your involvement can help improve future patient care.
You can decide to stop participating at any time.

Who may be eligible?

To be considered for this project, you need to have a confirmed diagnosis of either Hepatocellular Carcinoma (HCC) or Cholangiocarcinoma. This includes if your cancer is at an early stage, an intermediate stage, or more advanced and has spread.

You also need to be at least 18 years old. Before you can join, you'll need to read and sign an informed consent form. This form explains what taking part involves, and by signing it, you confirm you understand and agree.

You cannot join this project if your treatment is only focused on making you comfortable (called 'best supportive care') without any specific cancer treatments like surgery, radiotherapy, or anti-cancer medicines.

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.

Do I have a confirmed diagnosis of Hepatocellular Carcinoma (HCC) or Cholangiocarcinoma?
Am I 18 years old or older?
Am I receiving active treatment for my cancer (not just comfort care)?
Am I able to read and sign an informed consent form?
Do I live in Germany? (The registry is for patients in Germany)

Answer every question to see your result.

What does participation involve?

If you decide to take part in this project, here's what it would generally involve: Your doctors will record information about your health, your cancer, and your treatments. This will happen over a period of up to three years.

They will collect details when you first join about your cancer, any other health conditions, and treatments you've had. As time goes on, they'll continue to record information about any new treatments you receive, such as medicines, radiotherapy, or surgery, and how you're responding.

A key part of your participation would be filling out questionnaires about your quality of life – how your health affects you day-to-day. This would happen up to three years. There are no new medications to take as part of this project, and your doctors will continue to treat you according to your individual needs.

Potential risks and benefits

Taking part in this project is generally very safe, as it mainly involves collecting information from your medical records and your experiences; it doesn't involve new treatments or procedures. The main benefit is that the information you share, combined with data from many other patients, will help doctors and researchers understand HCC and Cholangiocarcinoma much better. This knowledge can lead to improved care and treatment strategies for future patients. There are no direct medical benefits to you personally from joining, but your contribution is valuable. You have the right to withdraw from the project at any time, for any reason, without it affecting your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Multiple sites all over germany
Unverified
Multiple Sites, Germany· Recruiting

Common questions

What is the main purpose of this project?

The main purpose is to collect detailed information from many patients with liver cancer (HCC or Cholangiocarcinoma) in Germany to better understand these diseases and improve future care.

Will I get new treatments if I join?

No, this project is not about new treatments. Your doctors will continue to give you the best care based on your needs, and the project will simply record those treatments.

What kind of information will be collected about me?

Doctors will record details about your cancer, your treatments (like surgery, medicines, radiotherapy), and how you are feeling (your quality of life).

How long will I be involved?

If you join, information will be collected about your health and treatments for up to three years.

Who can join this project?

You can join if you are 18 or older, have a confirmed diagnosis of HCC or Cholangiocarcinoma, and are receiving active treatments for your cancer (not just comfort care).

How to find out more

iOMEDICO AG

info@iomedico.com +49 761 15242-0 Official trial record

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