Quality of Life and Medical Care of Long-term Sarcoma Survivors in Germany (PROSa+)
This study, called PROSa+, is finding out more about people in Germany who have had sarcoma cancer for at least five years. Sarcoma is a rare type of cancer, and while treatments can be very good, sometimes they can cause problems years later. This is an 'observational' study, meaning you won't be given any new treatments or medicines. Instead, it involves filling out questionnaires and some people might have an interview. Researchers will also look at existing health records. The aim is to understand how sarcoma survivors are feeling, what their lives are like, and their experiences with medical care to help improve support for future patients.
At a glance
What is this study about?
This study, called PROSa+, is all about understanding the lives of people in Germany who have lived with a rare type of cancer called sarcoma for five years or more. Sarcomas can appear almost anywhere in the body, and while they're rare, the treatments for them, though often successful, can sometimes lead to lasting health issues or changes in a person's life many years down the line. We don't know enough about these long-term effects, and that's exactly what this study wants to find out.
The researchers want to learn directly from survivors about their health, how they're feeling, their experiences with doctors and hospitals, and their overall life situation. They are particularly interested in certain groups, such as those who had bone sarcomas, or specific types of sarcoma that required lots of different treatments, and also young adults who have survived sarcoma.
This isn't a study where you'll be given new medicines or treatments; it's an 'observational' study. This means the researchers are simply observing and gathering information. By collecting this detailed information, the study aims to shed light on what life is like for sarcoma survivors in the long term, helping improve care and support for people in the future.
Key takeaways
- It's an observational study for sarcoma survivors in Germany.
- It aims to understand long-term health and quality of life after sarcoma.
- Participation involves filling out a questionnaire (online or paper).
- No new treatments or hospital visits are required.
- It helps improve future care for sarcoma patients.
- You must have been diagnosed with sarcoma at least 5 years ago.
Who may be eligible?
You might be able to take part if you've been diagnosed with a type of sarcoma cancer, including specific types like soft tissue sarcoma, bone sarcoma, or GIST. A key requirement is that it must have been at least five years since you were first diagnosed with sarcoma. You can be someone who is still dealing with the disease, or someone whose cancer is currently under control.
You need to be 18 years old or older at the time you decide to join the study. Importantly, you would need to be able to complete a questionnaire, which means you should be able to understand and answer questions in German.
You wouldn't be able to join if you have a specific type of tumour called a Desmoid tumour, or if for any reason you can't complete a questionnaire, for example, if you have difficulty with the German language or if you have memory problems.
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 sarcoma (not Desmoid tumours)?
- Was your diagnosis at least 5 years ago?
- Are you 18 years old or older?
- Can you complete a questionnaire in German?
What does participation involve?
If you decide to take part in this study, you won't need to visit a clinic specially for the research. Instead, you'll be asked to complete a questionnaire, which you can do either on paper or online. This questionnaire will ask about your health, how you feel, your personal experiences with medical care, and your general life situation. For a smaller number of people (up to 60), there might also be an invitation for a detailed interview to talk more about your experiences.
The researchers will also look at health information that is already stored in existing cancer registries and from a previous study called PROSa. This means they will combine the information you provide with your existing medical records, but no new tests or procedures will be done as part of this study. The questionnaires are a one-off activity, so there are no ongoing visits or long-term follow-up required directly from you for this particular study, though the researchers may use your data over time by linking it to other information.
Potential risks and benefits
Locations (5)
- Technical University DresdenVerified postcodeDresden, Germany· Recruiting
- University Hospital EssenVerified postcodeEssen, Germany· Not yet recruiting
- NCT HeidelbergVerified postcodeHeidelberg, Germany· Recruiting
- Sarcoma Center MannheimVerified postcodeMannheim, Germany· Recruiting
- Deutsche Sarkom-StiftungVerified postcodeWölfersheim, Germany· Recruiting
Common questions
What is sarcoma?
Sarcoma is a rare type of cancer that can grow in different parts of your body, like bones, muscles, or fat.
Will I get new treatment in this study?
No, this is an 'observational' study. You won't be given any new treatments or medicines.
Do I have to live in Germany to take part?
Yes, this study is focusing on sarcoma survivors in Germany.
What does 'long-term survivor' mean in this study?
It means you were diagnosed with sarcoma at least five years ago.
What will happen to my information?
Your information will be combined with others' data to understand overall trends and experiences. It will be kept confidential.
How to find out more
Tanja Strukelj, M. A.
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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