Research Projects & Surveys
Setting the agenda in sarcoma research has historically been the domain of researchers and clinicians. This traditional approach of placing scientific rigor before the patient’s reality, however, is changing. This evolution is reflected in the growth of patient-centered organizations and patient advocacy groups that seek to meaningfully integrate patients into the process of prioritizing research needs.
As SPAGN, we feel that research decision making sometimes depend on other reasons than actual needs and most important questions for patients. Therefore, we work towards developing a strategy and clear direction to ultimately improve outcomes for sarcoma patients – in a collaborative effort of patient advocates, patients, carers and sarcoma experts.
Find out more about our initiatives and surveys:
The Global Sarcoma Diagnosis Pathway Survey is Now Closed!
Early diagnosis of sarcoma is crucial as it ensures that the tumor is discovered before the disease has spread extensively. This is why SPAGN conducted the Global Sarcoma Diagnosis Pathway Survey in 2024, focusing on the importance of early and accurate diagnosis. We are thrilled to share that more than 1,800 patients and caregivers participated in the survey, providing invaluable insights into their experiences.
We are currently analyzing the data collected from this survey to build upon the existing insights and address these knowledge gaps. The goal is to improve understanding and awareness of the sarcoma diagnosis pathway globally, ultimately benefiting the entire sarcoma community.
Prevouis finalized projects
The Patient-Powered Research Network & Surveys
Find out more here.
The Bone Sarcoma Research Survey
Find out more here.
