PROSa+ Study on Long-Term Effects in Sarcoma Survivors Begins Recruitment

Sarcomas account for approximately one percent of all cancer cases and are therefore considered rare diseases. They comprise a highly heterogeneous group of malignancies that can arise almost anywhere in the body, affecting connective tissue, bones, cartilage, or muscles. Both the disease itself and its treatment can have profound long-term consequences many years after diagnosis, including reduced life expectancy, impaired quality of life, and persistent physical, psychological, and social burdens.

Research as a Foundation for Improving Long-Term Follow-Up Care

To date, there is limited scientific evidence on the living conditions of long-term sarcoma survivors. A research team led by the National Center for Tumor Diseases (NCT/UCC) Dresden aims to close this knowledge gap with the PROSa+ study. The objective is to systematically assess the needs and risks of those affected in order to gain a deeper understanding of their health-related and psychosocial situation. Based on these findings, recommendations will be developed to improve the long-term care and follow-up of people diagnosed with sarcoma.

Patient Involvement as an Equal Partner

“Our core mission is to support people with a sarcoma diagnosis in all areas of their lives,” says Markus Wartenberg, Deputy Chairman of the Board of the German Sarcoma Foundation, which is involved in the PROSa+ study as a strong representative of patient interests. “The burden of cancer often persists throughout a lifetime. That is why we are committed to optimizing follow-up care and long-term support for those affected.”

The PROSa+ study is part of the German Cancer Aid funding priority program “Long-Term Survival After Cancer – Data Collection and Data Analysis” and is funded by German Cancer Aid with Euro 890,000 over a period of three years. In addition to NCT/UCC Dresden and the German Sarcoma Foundation, key partners in the study include the German Cancer Research Center (DKFZ), the University Hospitals of Essen, Mannheim, and Heidelberg, as well as the Central Institute of Mental Health in Mannheim.

Who Can Participate in the PROSa+ Study?

Adults whose initial diagnosis of a malignant or intermediate sarcoma entity (soft tissue sarcomas, bone sarcomas, GIST, TGCT) was made at least five years ago are eligible to participate in the survey. Information about the study is available through the participating study centers (Sarcoma Center at WTZ Essen, Sarcoma Center at Mannheim University Medical Center, Heidelberg University Hospital, and Dresden University Hospital) or by contacting the study coordination office in Dresden directly.

In total, approximately 1,600 long-term survivors will be surveyed once using a scientifically validated questionnaire. In addition, interviews will be conducted with up to 60 volunteers to gain deeper insight into their individual experiences and perspectives.

Further information and contact details for interested participants:
https://www.sarkome-prosaplus.de

Central Study Coordination:
Tanja Strukelj
kontakt-prosaplus@ukdd.de
Phone: +49 (0)351 458 7056

Principal Investigator:
Dr. Martin Eichler (PI)
Martin.Eichler@ukdd.de
National Center for Tumor Diseases Dresden (NCT/UCC)
Core Unit Patient-Reported Outcomes