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So far, there is little scientific knowledge about the life situation of long-term sarcoma survivors. Researchers under the leadership of the National Center for Tumor Diseases (NCT/UCC) Dresden want to close this gap by conducting the “PROSa+” clinical trial and by systematically recording the needs and risks of this patient group.
Sarcomas are a rare and diverse group of cancers that can occur in almost any part of the body. They account for only around one percent of all cancer diagnoses and are therefore considered a rare disease. Even many years after the diagnosis, sarcomas and their treatment can have a significant impact on the lives of those affected - for example through reduced life expectancy, reduced quality of life, as well as psychological and social stresses.
So far, there is little scientific knowledge about the life situation of long-term sarcoma survivors. Researchers under the leadership of the National Center for Tumor Diseases (NCT/UCC) Dresden want to close this gap by conducting the “PROSa+” clinical trial and by systematically recording the needs and risks of this patient group. The aim is to gain a better understanding of both the health and psychosocial situation of long-term survivors and to derive specific recommendations that will improve the both healthcare and aftercare of sarcoma patients in the long term.
"Sarcoma survivors are often confronted with late effects that the healthcare system has so far hardly taken into account. Our aim with ‘PROSa+’ is to improve their care in a targeted manner," says Dr. Martin Eichler. He is head of the clinical trial and head of the Core Unit Patient-Reported Outcomes at the NCT/UCC Dresden, which provides patient and family counseling and researches aspects such as the quality of life of cancer patients.
The “PROSa+” clincal trial is part of the funding priority program “Long-term survival after cancer - data collection and data analysis” of the German Cancer Aid (DKH) and is funded with almost EUR 900,000.
"We are delighted that German Cancer Aid is giving us the opportunity to investigate the long-term consequences of sarcoma. Thanks to the latest successful therapies, the number of survivors is constantly increasing. It is therefore of great significance to ensure optimal care for this group of patients," explains Prof. Klaus-Dieter Schaser, one of the directors of the Sarcoma Center Dresden and co-initiator of the clinical trial.
The design of the clinical trial
The clinical trial combines quantitative and qualitative research methods in order to obtain as comprehensive a picture as possible of life five years after a sarcoma diagnosis: Around 1,600 long-term survivors will be interviewed once by using a scientifically based questionnaire. In addition, interviews will be conducted with up to 60 people affected in order to better understand their individual experiences and perspectives. Data collection is scheduled to begin in fall of 2025.
The clinical trial will run for three years. In addition to the leadership team of the University Hospital Dresden and the support provided by the DKH, the German Cancer Research Center (DKFZ), the University Hospitals of Essen, Mannheim and Heidelberg, and the German Sarcoma Foundation are responsible for the clinical study.
Successful predecessor trial
PROSa+ is a follow-up project to the PROSa trial conducted between 2017 and 2020. Under the leadership of PD Dr. Markus Schuler (Department of Medicine 1) and Prof. Jochen Schmitt (Head of the Center for Evidence-based Healthcare (ZEGV)), PROSa investigated the quality of life and care situation of sarcoma patients in Germany and resulted in a large number of publications.
Core Unit Patient-Reported Outcomes
At the NCT/UCC, scientists work in various specialized research units to generate new expertise. One of these units is the research structure "Oncological Outcome and health-services research." Its goal is to improve the quality of care for cancer patients and implement evidence-based care concepts. Within this research structure, the Core Unit Patient-Reported Outcomes focuses on the collection of self-reported results. The information collected helps to better tailor treatment to the individual needs of those affected and improve care in everyday clinical practice.
Contact:
Anne-Stephanie Vetter
Staff Unit Public Relations of Carl Gustav Carus Faculty of Medicine
at TUD Dresden University of Technology
National Center for Tumor Diseases (NCT/UCC) Dresden
Tel.: +49 (0) 351 458 17903
Email: anne-stephanie.vetter@tu-dresden.de
Tanja Strukelj (Project coordinator): tanja.strukelj@ukdd.de
Dr. Martin Eichler (PI): Martin.Eichler@ukdd.de
National Center for Tumor Diseases Dresden (NCT/UCC)
Core Unit Patient-Reported Outcomes
https://www.krebshilfe.de/forschen/projekte/foerderschwerpunkte/langzeitueberleb...
http://The National Center for Tumor Diseases (NCT/UCC) Dresden is a joint institution involving the German Cancer Research Center (German abbreviation: DKFZ), the Faculty of Medicine at TU Dresden, the Carl Gustav Carus University Hospital Dresden and the Helmholtz-Zentrum Dresden-Rossendorf (HZDR). In doing so, patients are research partners on an equal footing.
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