Quality of life and medical care for long-term sarcoma survivors in Germany (PROSa+)
Understanding Long-Term Sarcoma Survivorship: Risk Profiles, Outcomes and Unmet Needs - A Joint Project of Research, Sarcoma Centres and Patient Experts (PROSa+)
This project will ask adults in Germany who were diagnosed with sarcoma at least five years ago to complete questionnaires and some interviews to see how cancer and its treatments affect their quality of life and medical care.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1600 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Technische Universität Dresden Academic / other |
| Locations | 5 sites (Dresden, Saxony and 4 other locations) |
| Trial ID | NCT07148193 on ClinicalTrials.gov |
What this trial studies
PROSa+ is a multicenter observational study combining a one-time cross-sectional questionnaire of 1,600 long-term sarcoma survivors (paper or online), up to 60 qualitative interviews, and longitudinal analyses linking existing sarcoma registries and the earlier PROSa cohort (2017–2020). The study focuses on subgroups with potential long-term risks, including bone sarcoma survivors, extremity or trunk sarcomas after multimodal treatment, retroperitoneal sarcomas, GIST (with or without long-term TKI therapy), and young adults. Data collected include patient-reported outcomes, patient-reported experiences, and socioeconomic measures, with recruitment via clinical networks, registries, and patient organizations. Participants must be adults (≥18 years) and at least five years post initial sarcoma diagnosis, with or without active disease.
Who should consider this trial
Good fit: Adults (age ≥18) living in Germany who were diagnosed with a sarcoma at least five years ago, able to complete questionnaires in German, and with or without active disease are the ideal candidates.
Not a fit: People diagnosed less than five years ago, those with desmoid tumors, or individuals unable to complete a structured questionnaire (for example due to insufficient German language skills or cognitive impairment) are unlikely to benefit from participation.
Why it matters
Potential benefit: If successful, the findings could identify unmet survivorship needs and inform improvements in follow-up care, supportive services, and health policy for long-term sarcoma survivors.
How similar studies have performed: Previous PROSa work (2017–2020) and other registry-based survivorship studies have documented quality-of-life and care issues in sarcoma survivors, but comprehensive long-term, mixed-methods data remain limited, making this approach comparatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosis of sarcoma according to the International Classification of Diseases for Oncology (ICD-O) and World Health Organization (WHO) classification, including soft tissue sarcoma, bone sarcoma, and GIST * At least 5 years since initial sarcoma diagnosis * With or without active disease * Age ≥18 years at the time of study participation Exclusion Criteria: * Diagnosis of Desmoid tumors * Inability to complete a structured questionnaire (e.g., due to insufficient German language skills, cognitive impairment, dementia)
Where this trial is running
Dresden, Saxony and 4 other locations
- Technical University Dresden — Dresden, Saxony, Germany (Recruiting)
- University Hospital Essen — Essen, Germany (Not_yet_recruiting)
- NCT Heidelberg — Heidelberg, Germany (Recruiting)
- Sarcoma Center Mannheim — Mannheim, Germany (Recruiting)
- Deutsche Sarkom-Stiftung — Wölfersheim, Germany (Recruiting)
Study contacts
- Principal investigator: Martin Eichler, Dr. — TU Dresden & NCT/ UCC Dresden
- Study coordinator: Tanja Strukelj, M. A.
- Email: tanja.strukelj@ukdd.de,
- Phone: +493514587056
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.