Consumer Research Opportunity - Share Your Experience

Consumer Research Opportunity - Share Your Experience

 

ANZSA's Consumer Advisory Pannel (CAP) are working with the Sarcoma Patient Advocacy Global Network (SPAGN) to promote their survey "The Importance of Early and Accurate Diagnosis of Sarcomas", This survey is for individuals diagnosed with sarcoma as well as their caregivers.

This is an amazing chance to share you lived experience. Your feedback on this survey will help analyze the diagnostic process, encompassing the pathway to diagnosis and post-diagnosis management, on a global scale. Based on these results, SPAGN aim to work together with you, specialists, and all stakeholders to identify opportunities to help improve the sarcoma diagnosis journey.  

Share Your Experince

Please share your experiences with SPAGN - whether they are positive or negative, both perspectives are important! Mmake sure your experiences are heard and counted and fill out the survey here: https://awareness.sarcoma-patients.org/survey/

About the Survey

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, the survey aims to gather valuable data directly from sarcoma patients and caregivers worldwide. SPAGN wants to better understand the patient experience in receiving a timely and correct diagnosis.

The anonymous online survey takes around 12-15 to complete. Participation is voluntary and you can stop the survey at any time. The aim of this survey is to help answer the question "What is the global reality of sarcoma patients concerning their diagnosis?". 

About SPAGN

The Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national sarcoma patient advocacy organizations. Uniting more than 65 member groups from five continents, SPAGN is the voice for sarcoma patients around the globe.

SPAGN is working to improve the treatment and care of sarcoma patients through information and advocacy, supporting its national members by increasing the visibility of sarcomas with policymakers and the public.