RecruitingOBSERVATIONAL

The Sarcoma Biology and Outcome Project

The Sarcoma Biology and Outcome Project, or SarcBOP, is setting up a comprehensive database and biological sample collection to learn more about sarcoma. This isn't a treatment trial, but rather a way to bring together all sorts of information related to sarcoma, including details from patient medical records, scans, lab results, and even experiences patients share themselves. By combining this with tissue samples, researchers hope to get a much clearer picture of sarcoma, how it behaves, and what treatments work best. This valuable resource will help researchers and doctors find better ways to diagnose and treat sarcoma in the future, ultimately benefiting patients.

At a glance

Status

Recruiting

Sponsor

Prof. Dr. Richard F Schlenk

Enrolment target

3,000

Start

23 Jul 2019

Estimated completion

31 Dec 2032

Sarcoma Malignant Mesenchymoma Sarcoma of Bone and Connective Tissue

What is this study about?

This project, called the Sarcoma Biology and Outcome Project or SarcBOP, is not a study where you would receive new treatments. Instead, it's about building a very thorough and comprehensive resource to help doctors and researchers understand sarcoma better. Think of it like creating a super-detailed library and a biological bank, all focused on sarcoma. The goal is to collect every possible piece of information that could be helpful, from how a patient's sarcoma looks on scans to and what treatments they've had, right down to tiny details about the cancer cells themselves and how patients are feeling.

By gathering all this different information and linking it with samples of tissue, blood, or other bodily fluids, researchers can look for patterns and connections. This could help them discover why some sarcomas grow differently, why some treatments work better for certain people, or even identify new ways to diagnose the disease earlier. Because this project works closely with various expert centres, including those focused on specific cancer diagnoses and clinical trials, it will grow over time, becoming an increasingly valuable tool.

The main idea behind SarcBOP is to create a continually updated picture of sarcoma that can be used by experts around the world. This in turn helps speed up discoveries and improve care for people with sarcoma. It's a key step in helping to find better ways to manage and treat this complex group of diseases in the future.

Key takeaways

SarcBOP is a research project, not a treatment trial.
It collects detailed information and samples about sarcoma.
The goal is to improve understanding and future treatments of sarcoma.
Participation involves sharing medical data and samples (usually from routine procedures).
It does not require extra hospital visits.
You can withdraw at any time without affecting your medical care.

Who may be eligible?

To be able to take part in this project, you would need to have been diagnosed with or be suspected of having a type of soft-tissue or bone sarcoma. There isn't an upper age limit, but you need to be at least 12 years old. Most importantly, you must be able to understand what the project involves and give your written permission to join.

There are a few reasons why someone might not be able to join. If you have a severe brain or mental health condition that would stop you from understanding the project and giving your permission, then unfortunately, you wouldn't be able to take part. Otherwise, the project aims to include a wide range of patients with sarcoma to make its data as complete as possible.

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 suspected or confirmed diagnosis of soft-tissue or bone sarcoma?
Am I 12 years old or older?
Do I understand what this project is asking me to do?
Am I able to give my written permission to participate?
Do I have any severe neurological or psychiatric conditions that would prevent me from giving informed consent?

Answer every question to see your result.

What does participation involve?

Taking part in SarcBOP means allowing the project to collect information about your sarcoma journey. This includes details from your medical records, such as your diagnosis, any other health conditions you have, and information about treatments like surgery, radiation, or medications you've received. They will also collect details from your scans and lab tests.

In addition to using information from your medical care, the project might ask you to complete questionnaires about how you are feeling and your quality of life. They will also collect and store biological samples, such as tissue from biopsies or surgeries, or blood samples, which would typically be taken during your routine medical appointments. You won't have extra visits just for this project; it works alongside your standard medical care. The information and samples will be collected over the course of your treatment and follow-up, for as long as you participate.

Potential risks and benefits

The main benefit of taking part in SarcBOP is knowing that your information is contributing to a large-scale effort to better understand sarcoma and improve future treatments for others. While there are no direct medical benefits to you personally, your participation is invaluable for scientific progress. As with any project involving personal health information, there's always a small risk of your data not remaining private, though strict measures are in place to protect your confidentiality. Providing samples or completing questionnaires should not involve any physical risks beyond those of your routine medical care. Remember, you can always change your mind and withdraw from the project at any time without affecting your medical care.

Locations (1)

National Center for Tumour Diseases, University Hospital Heidelberg
Verified postcode
Heidelberg, Germany· Recruiting

Common questions

What is sarcoma?

Sarcoma is a group of rare cancers that can develop in bones or soft tissues like muscle, fat, and blood vessels.

Is this a clinical trial where I get new medicine?

No, this is not a trial giving new treatments. It's a project building a database to learn more about sarcoma.

What kind of information will they collect?

They will collect details from your medical records, scans, lab tests, and possibly ask you about your experiences, plus store some tissue samples.

Will taking part mean extra hospital visits?

No, your participation will not lead to extra hospital visits. Information and samples are typically collected during your regular care.

Can I stop participating if I change my mind?

Yes, you can withdraw from the project at any time. Your decision will not affect your medical care.

How to find out more

Richard F. Schlenk, Prof.Dr.med

richard.schlenk@med.uni-heidelberg.de +49 6221 56 6228 Official trial record

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