RecruitingOBSERVATIONAL

REtroperitoneal SArcoma Registry: an International Prospective Initiative

This study focuses on a rare type of cancer called retroperitoneal sarcoma (RPS), which grows in the back of the tummy area. Surgery is currently the most effective treatment for RPS that hasn't spread, but doctors need more information to improve how they treat it. This international study will collect detailed information from patients undergoing surgery for RPS at specialist hospitals. By doing this, researchers hope to better understand how well treatments work, identify factors that impact patient recovery, and potentially discover new ways to battle this disease. The goal is to improve care for future RPS patients by gathering high-quality data from many centers.

At a glance

Status

Recruiting

Sponsor

Fondazione IRCCS Istituto Nazionale dei Tumori, Milano

Enrolment target

2,000

Start

01 Sep 2016

Estimated completion

31 Dec 2030

Retroperitoneal Sarcoma

What is this study about?

Retroperitoneal sarcoma (RPS) is a rare type of cancer that develops in the area at the back of your abdomen, behind your organs like your bowel and kidneys. Because it's hidden deep inside, it can be hard to spot early. Currently, surgery is often the best way to try and remove this cancer if it hasn't spread to other parts of the body. However, because RPS is uncommon, doctors don't have a lot of detailed information from many patients to fully understand the best surgical approaches or other treatments.

This study, called the REtroperitoneal SArcoma Registry, is an international effort to change that. Doctors at different hospitals around the world are working together to collect very specific information from patients who are having surgery for RPS for the first time. They want to track things like how well patients recover, whether the cancer comes back, and if it spreads. They also want to look at how different treatments, including radiotherapy and chemotherapy, might affect these outcomes.

By gathering this high-quality, detailed information from many patients, researchers hope to learn more about RPS. This includes understanding the different types of RPS, how they behave, and what factors might predict if the cancer will return or spread. Ultimately, this research aims to improve future treatment plans and care for people with retroperitoneal sarcoma, making a real difference in patients' lives.

Key takeaways

This study collects information about a rare cancer called retroperitoneal sarcoma (RPS).
It aims to improve future treatment and care for RPS patients.
Participation involves sharing medical information from your standard care, not new treatments.
You must be an adult with a new RPS diagnosis, having surgery at a specialist hospital.
Your involvement helps doctors better understand and fight this rare disease.

Who may be eligible?

To be part of this study, you need to be at least 18 years old and have been diagnosed with retroperitoneal sarcoma for the first time. The sarcoma must also be located in the retroperitoneal area, and you should be having surgery for it at one of the specialist hospitals taking part in this research.

Before surgery, you will need to have had specific scans, such as a special CT scan or MRI of your abdomen (tummy area). A specialist cancer doctor must have also confirmed your diagnosis after looking at a sample of the tumor. You’ll also need to understand and sign a consent form, agreeing to take part and follow the study's plan for check-ups.

This study is not for people under 18, those whose cancer has already come back, or if you have a non-cancerous growth. If you have a serious mental health condition that would stop you from understanding the study or attending follow-up appointments, or if it's not possible to keep track of your health over time, you wouldn't be 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.

Are you 18 years old or older?
Have you been diagnosed with retroperitoneal sarcoma for the first time?
Are you planning to have surgery for your RPS at a specialist hospital?
Have you had the necessary scans (CT/MRI) before your surgery?
Are you able to attend follow-up appointments as advised by your doctor?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, the main thing you'll be doing is allowing your medical team to collect detailed information about your retroperitoneal sarcoma and its treatment. This includes details from your diagnosis, your surgery, and any other treatments like chemotherapy or radiotherapy you might receive. They will also gather information from your scans and the tumor samples taken during surgery.

After your surgery, the study team will track your health over time through your regular follow-up appointments. This means they'll be looking at how you recover, if the cancer returns, or if it spreads. You won't have any extra appointments or medication specifically because of this study; all the information will come from your standard care. The total duration of your participation will depend on how long your medical team usually monitors patients after this type of surgery, and it will be discussed with you.

Potential risks and benefits

Taking part in this study doesn't involve any additional medical procedures or changes to your treatment. Therefore, there are no direct physical risks from participating. The main benefit is that the information gathered from your experience, combined with that of many other patients, will help doctors learn more about retroperitoneal sarcoma and improve care for future patients. There's no guarantee that you will personally benefit directly from taking part. You are free to withdraw from the study at any time without giving a reason, and this will not affect your medical care.

Locations (22)

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

University of Southern California (USC)
Verified postcode
Los Angeles, United States· Recruiting
Mayo Clinic
Verified postcode
Jacksonville, United States· Recruiting
Moffitt Cancer Center
Verified postcode
Tampa, United States· Recruiting
Winship Cancer Institute
Verified postcode
Emory, United States· Recruiting
Brigham and Women's Hospital/Dana-Farber Cancer Institute
Verified postcode
Boston, United States· Recruiting
The Ohio State University
Verified postcode
Columbus, United States· Recruiting
Peter MacCallum Cancer Center
Verified postcode
Melbourne, Australia· Recruiting
Maisonneuve-Rosemont Hospital / University of Montreal
Verified postcode
Montreal, Canada· Not yet recruiting
The Ottawa Hospital
Verified postcode
Ottawa, Canada· Recruiting
Mount Sinai / Princess Margaret
Verified postcode
Toronto, Canada· Recruiting
Institut Curie
Verified postcode
Paris, France· Recruiting
University Medical Center and Medical Faculty Mannheim, University of Heidelberg
Verified postcode
Mannheim, Germany· Not yet recruiting

Common questions

What is retroperitoneal sarcoma (RPS)?

It's a rare type of cancer that grows in the soft tissues at the back of your abdomen (tummy area), behind your organs.

Why is this study important?

Because RPS is rare, doctors need more information from many patients to find the best ways to treat it and help improve patient outcomes in the future.

Will I receive new treatments in this study?

No, this study only collects information about your standard medical care and treatments; it doesn't involve new or experimental treatments.

Who can join this study?

Adults (18+) newly diagnosed with retroperitoneal sarcoma who are having surgery at a participating specialist hospital.

Can I stop participating if I change my mind?

Yes, you can withdraw from the study at any time, and it won't affect your medical care or relationship with your doctors.

How to find out more

Alessandro Gronchi, MD

alessandro.gronchi@istitutotumori.mi.it +39022390 Official trial record

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