Preliminary findings from over 880 patient responses across 40 countries were presented in a poster during CTOS reveal critical insights:

• 👥 Respondent Characteristics:

  • Patients only
  • Median age: 49 years.
  • Gender: 69% female and 31% male respondents.

• ⏳ Time to Diagnosis:

  • The median time from symptom onset to a correct diagnosis exceeds 3 months across the whole patient population, with some patients waiting up to 20 years for their diagnosis.

• 🩺 Diagnosis Intervals:

  • Patient Interval: Median time from symptom onset to the first medical visit: Median of 35 days.
  • Care Interval: Median time from the first medical visit to a correct diagnosis: Median of 60 days, with striking variation by age and sarcoma subtype.
  • The care interval consistently exceeds the patient interva

• ❌ Rates of Misdiagnosis:

  • Misdiagnoses are prevalent with 22% across all patient groups, with the 30–44 age group reporting the highest rate at 31%.

• 🔍 Group of 30-44 year olds:

  • Among all outcome evaluations, the 30-44 age group stands out with a median diagnostic interval of 5 months and a 31% misdiagnosis rate, higher than the overall average.