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