PROSA+
Understanding survival in sarcomas
Coordinating study lead
Dr. Martin Eichler (Nationales Zentrum für Tumorerkrankungen Dresden Universitätskrebszentrum UCC)
Head of study center Heidelberg
Prof. Dr. Karen Steindorf (DKFZ), Prof. Dr. Richard Schlenk (NCT Heidelberg)
Local coordination and execution in Heidelberg
Dr. Patricia Blickle (DKFZ), Dr. Martina Schmidt (DKFZ), Editha Gnutzmann (NCT Heidelberg), Luis Scheck (NCT Heidelberg)
Further information and current updates can be found on the project website (available only in German):
Short description
Thanks to improved diagnostics and treatment, more and more people are now surviving a sarcoma and GIST disease for many years, or even decades. However, this often comes with particular challenges, such as the long-term effects of treatment or fears of recurrence.
Examples of these challenges and consequences include:
- Physical consequences of treatment, e.g. scarring, limited mobility or pain
- Psychological distress and side effects, e.g. fatigue, sleep disorders, anxiety or depressive moods
- Restrictions in everyday life and leisure activities
- Challenges in returning to work
- Financial and economic implications
To date, there have been few scientific studies on long-term survival in sarcoma patients.
PROSa+ is the first study in Germany — and one of the first worldwide — to specifically examine the quality of life, care experiences, and unmet needs of long-term sarcoma survivors. The results will help improve care and aftercare for patients, tailoring it more closely to their needs.
How is PROSa+ carried out?
The study involves completing a questionnaire once. The questions cover various aspects, including well-being, quality of life, potential long-term effects, and general life circumstances. Some questions also refer to treatment experiences and satisfaction with care.
There is also the option of providing more detailed feedback on experiences with the disease in an online interview.
Current status
Recruitment start is planned for November 2025.
Funding
PROSa+ is part of the German Cancer Aid (DKH) funding program ‘Long-term survival after cancer – data collection and data analysis’.