Early and accurate diagnosis of sarcoma is vital. When caught early, treatment is often less aggressive and outcomes improve. Delays or misdiagnoses, however, can lead to disease progression, fewer treatment options, and lower survival.
Getting the correct subtype is also essential—wrong or overly aggressive treatments can be ineffective or harmful. Yet, diagnostic delays and errors remain common, and current data is fragmented, often limited to certain countries, subtypes, or parts of the diagnostic process.
This global survey was created to address that gap. By gathering real-world experiences from sarcoma patients, caregivers, and families, we aim to better understand diagnostic challenges and regional disparities. The goal is to inform efforts toward earlier detection, greater awareness, and more equitable access to expert care. Data analysis is ongoing.
About the survey
 The online survey, available in 18 languages, ran from July 1 to December 31, 2024. It was promoted via SPAGN’s global network, member groups, CTOS, and social media. Patients and caregivers were asked to provide:
- Diagnostic journey: symptom onset to diagnosis timeline, misdiagnoses, healthcare professionals consulted, barriers encountered, referral pathways, and whether genomic/mutational testing was conducted.
- Sociodemographic data: age, gender, country, educational background, access to and affordability of healthcare, and participant’s connection to sarcoma.
- Tumor information: sarcoma subtype, location, disease stage at diagnosis, current status, previous cancers, and hereditary syndromes.
The questionnaire was reviewed and validated across diverse cultural backgrounds to minimize misunderstanding and was designed to be inclusive by offering multiple languages.
Who responded
This dataset includes responses from 1,803 individuals across 49 countries, with a median age of 53. The majority of respondents were female (72%), and most responses came from individuals living in high-income countries (88%).
In terms of sarcoma subtype, 59% had soft tissue sarcomas, followed by bone sarcomas (22%), and GIST (15%). A small portion of respondents belonged to intermediate categories (2%) or did not specify (2%).
Most respondents was between 40 and 64 years of age, with smaller proportions in both younger and older age brackets. Regarding tumor location, 58% reported tumors in the trunk, 30% in extremities, and smaller percentages in head & neck (4.8%) and organ systems (3.8%).
In terms of education, a large portion of respondents were highly educated: 31% held a university degree, 25% had a bachelor’s degree, and 15% held work or business qualifications. Only a small percentage reported primary (3.2%) or secondary (19%) education as their highest level.
First findings presentations
First findings have been presented in various occasions:
- Connective Tissue Oncology Society (CTOS) Annual Meeting, November 2024: View the poster presentation on preliminary results:
https://www.sarcoma-patients.org/ctos24/Â - German Sarcoma Conference 2025, March 2025: Findings on timelines to diagnosis and frequency of misdiagnosis based on German data
- ESMO (European Society for Medical Oncology) Sarcoma & Rare Cancers Meeting, March 2025: Presentation on timelines to diagnosis and frequency of misdiagnosis – global data
- SPAGN Annual Conference, April 2025: Presentation on timelines to diagnosis and frequency of misdiagnosis – global data
- EMSOS (European Musculoskeletal Oncology Society) Annual Meeting, April 2025: Presentation on timelines to diagnosis, frequency of misdiagnosis and symptoms for bone sarcomas
Further presentations are planned as well as a publication and report on the findings.
