“Determinants of Diagnostic Intervals in Sarcoma: Results from the Global Sarcoma Diagnosis Pathway Survey” (Abstract 2712P)

At ESMO 2025, SPAGN and partners presented new global data from the Sarcoma Diagnosis Pathway Survey — the largest study to date examining the patient journey from first symptoms to confirmed sarcoma diagnosis. Based on responses from 1,803 patients across 49 countries, the median time to diagnosis was 92 days.

🔍 Key determinants of longer diagnostic intervals:

• Female gender

• Presence of a genetic syndrome

• Misdiagnosis

In contrast, patients who reported symptoms before diagnosis were more likely to be diagnosed faster.

This global effort demonstrates the power of patient advocacy in driving real-world research. Together, we can turn insights like these into action for earlier, more equitable sarcoma diagnosis.

Health-Related Quality of Life in Advanced STS

“Health-related quality of life in patients with advanced soft tissue sarcoma receiving first-line palliative chemotherapy (HOLISTIC): longitudinal results from a prospective, observational cohort study.”

In this prospective study of patients with advanced Soft Tissue Sarcoma, conducted across the Netherlands and the UK, it was found that:

• Health-related quality of life significantly declined during first-line palliative chemotherapy, regardless of tumour response.

• Fitter patients experienced a faster decline in Global Health Scores.

▶️ Integrating PROs is key to informed decision-making, as patients should be aware that palliative chemotherapy may reduce quality of life despite limited survival benefit.

“Use of Next-Generation Sequencing (NGS) in Sarcoma: Multidisciplinary Expert Consensus”

A new international consensus review has clarified how next-generation sequencing (NGS) should be used in sarcoma diagnosis and treatment. Experts agree that routine, broad use of NGS across all sarcoma cases is not currently supported by evidence. While molecular testing can play an important role in specific subtypes, most sarcomas can still be accurately diagnosed through pathology and standard molecular techniques.

The group emphasizes that NGS should only be applied selectively and interpreted within expert sarcoma centers, ideally through multidisciplinary discussions that include oncologists, pathologists, and geneticists. When used appropriately, NGS can help identify actionable mutations in rare cases — but without expert evaluation, its benefit remains limited.

▶️ Main takeaway: NGS is a valuable tool when used strategically, but expert interpretation and careful selection are essential to ensure meaningful clinical benefit for patients.

Each year, the Sarcoma Patient Advocacy Global Network (SPAGN) honors member groups who are driving innovation in patient advocacy through our Advocacy in Action Award.

In addition, in 2025, Ornella Gonzato from the Fondazione Paola Gonzato Rete Sarcoma ETS, Italy launched a special bone sarcoma award: the Paola Gonzato Memory Award that will also be given this year as well.

• Sarcoma-specific (STS, Bone, GIST, Desmoid, Chordoma)
• Completed or ongoing (not in planning)
• Focused on tangible advocacy impact

• Are completed and evidence-based
• Come from regional or national organizations
• Demonstrate measurable outcomes in patient care or quality of life

Each year, SPAGN actively participates in the CTOS Annual Meeting to ensure that the patient voice is meaningfully represented in global sarcoma research and care.

We’re delighted to share that patient advocacy will once again have a valued presence at the Connective Tissue Oncology Society (CTOS) Annual Meeting. This year, we are pleased to host the Patient Advocacy Lounge at CTOS 2025 in Boca Raton, Florida: 

📍 Patient Advocacy Lounge: Estate Ballroom II and III in the Mizner Convention Center.

🗓️ Thursday, November 13 – Saturday, November 15, 2025

🕣 Open daily from 8:30 am – 5:00 pm

The Lounge will serve as a welcoming hub where patient representatives can meet, exchange, and engage with all conference participants. We look forward to seeing you there!

We will also once again have the Advocacy Poster Wall in the Patient Advocacy Lounge. 

📌Additionaly, patient groups attending CTOS are welcome to display brochures or informational materials on the information tables in the Lounge. This opportunity is open to all patient organizations at CTOS, regardless of SPAGN membership.

We’re happy to remind you that the SPAGN Annual Conference 2026 will take place from May 1–3, 2026!

Mark your calendars for another inspiring opportunity to connect, collaborate, and exchange knowledge with the global sarcoma community.

Stay tuned — more information on the location, program, and registration details will follow soon.