Not yet recruitingOBSERVATIONAL

A Comprehensive, Multinational GIST Registry

This study is for people who have been diagnosed with a rare type of stomach cancer called a Gastrointestinal Stromal Tumor (GIST). It's a scientific study where doctors gather health information and sometimes samples like blood or tissue from patients. This helps them understand GIST better, find out why some treatments stop working, and develop new treatments in the future, particularly for less common types of GIST. It doesn't involve new medicines or procedures; your regular care continues as normal. Your participation is completely your choice, and you can stop at any time without affecting your medical care.

At a glance

Status

Not yet recruiting

Sponsor

Universität Duisburg-Essen

Enrolment target

1,000

Start

01 Jan 2026

Estimated completion

01 Jan 2056

Gastrointenstinal Stromal Tumor (GIST)GIST - Gastrointestinal Stromal Tumor

What is this study about?

This study is called a 'registry study' for Gastrointestinal Stromal Tumors (GIST). GIST is a rare type of cancer that starts in the digestive system. The main goal of this study is to help doctors and scientists learn more about GIST by gathering information from many patients. They want to understand how GIST behaves, why some treatments work better than others, and why some specific types of GIST are harder to treat.

Think of it like putting together a very large puzzle. Each piece of information from a patient helps to complete the picture of GIST. Researchers hope to understand what makes GIST behave in certain ways, identify things that might lead to worse outcomes, and use this knowledge to design better studies and treatments in the future. This is especially important for rarer forms of GIST where there are fewer treatment options available right now.

It's important to know that this study won't change your current medical care or involve you having new, experimental treatments. Your doctors will continue to treat you as they normally would. The study simply collects information from your regular check-ups and, with your permission, may ask for a few extra things like blood samples or tissue if you're already having a procedure.

Key takeaways

A study for people with GIST (a rare stomach cancer).
It collects medical information and sometimes samples to learn more about GIST.
No new treatments or extra appointments; your usual care continues.
Helps researchers understand GIST better and develop future treatments.
Participation is completely optional and you can leave at any time.

Who may be eligible?

To take part in this study, you need to have been diagnosed with a Gastrointestinal Stromal Tumor (GIST).

You must also be able to understand what the study involves and be able to give your clear agreement to participate. You shouldn't have any serious brain or mental health conditions that would make it difficult for you to understand and agree to join.

Essentially, if you have a GIST diagnosis and can understand and agree to the study, you're likely able to join.

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.

Have you been diagnosed with GIST?
Can you understand what the study involves?
Are you able to agree to take part?
Do you feel physically and mentally well enough to participate?

Answer every question to see your result.

What does participation involve?

If you decide to take part, the study will gather information from your medical records, including results from scans like CT or MRI, and notes from your doctor's visits. You might also be asked to fill out occasional questionnaires about your health and how you're feeling, which are optional. During your routine check-ups and blood tests, you might be asked to provide a small extra blood sample (up to about 10 teaspoons).

If you have surgery for your GIST, a small part of the tumor tissue that is removed might be saved for research, but only if you agree. Other samples like saliva or urine might also be collected, but only if these are already being taken as part of your normal care. You won't have any extra appointments or tests just for this study, and your regular medical care will continue as usual. The study team may contact you periodically if you move to another hospital for treatment.

Potential risks and benefits

Participating in this study might not directly benefit you, but the information collected will help doctors and researchers understand GIST better, potentially leading to improved treatments and care for future patients. There are very few risks, mainly the small discomfort of additional blood samples if you agree to them, or the time taken to complete questionnaires. Remember, joining is entirely your choice, and you can stop participating at any time without it affecting your medical care or your relationship with your healthcare team.

Locations (1)

University Hospital Essem
Verified postcode
Essen, Germany

Common questions

Will I get new treatments in this study?

No, this study does not involve new treatments or medications. Your GIST will continue to be treated by your doctors as normal.

Do I have to give blood samples?

You might be asked to give small blood samples during your routine blood tests, but this is optional. You can still join the study even if you prefer not to give samples.

Will this study take up a lot of my time?

No, it shouldn't. You won't have extra appointments or tests just for the study. Information will be collected from your regular visits, and you might complete optional questionnaires.

What happens to my personal information?

The study aims to use your information to help research GIST. Your privacy will be protected, and your data will be handled carefully, often made anonymous so you can't be identified.

Can I change my mind after joining?

Yes, absolutely. You can withdraw from the study at any time without giving a reason, and it will not affect your medical care or your relationship with your doctor.

How to find out more

Johanna Falkenhorst, MD

johanna.falkenhorst@uk-essen.de +40 201 723 2011 Official trial record

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