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 Importance of Early and Accurate Diagnosis of Sarcomas

Sarcoma patients face significant challenges in diagnosis, often experiencing delays and misdiagnoses, with serious consequences on treatment decisions, prognosis and survival. While data highlighting these issues exist, the sarcoma community lacks comprehensive, internationally-collated information about the sarcoma diagnosis pathway.

To address this, our "Global Sarcoma Diagnosis Pathway Survey" aims to gather valuable data directly from sarcoma patients and caregivers worldwide, across all subtypes. SPAGN wants to better understand the patient experience in receiving a timely and correct diagnosis.

Dear patients, dear caregivers: Please make sure your experiences are heard and counted and fill out the survey here: https://awareness.sarcoma-patients.org/survey/