UK: Leiomyosarcoma Research UK

Organisation Profile

We are a UK Charity (Registered Charity Number: 1210455) run by a patient-led team of volunteers working to see better outcomes for those diagnosed with Leiomyosarcoma.  In April 2025, sponsored by Sarcoma UK, we hosted a workshop in Manchester, UK attended by the oncologists, researchers, gynaecologists, surgeons, academics and radiologists from across the country to determine the best steps to take to overcome obstacles in finding a cure for Leiomyosarcoma and providing better care for those impacted. The workshop underscored the critical importance of collaboration, standardisation, and early diagnosis in improving outcomes for patients with Leiomyosarcoma and other soft tissue sarcomas. By providing a platform for experts to discuss current challenges and future directions, the Leiomyosarcoma 2025 Workshop emphasised the need for:

• Improving Diagnostic Accuracy: Leveraging advanced imaging technologies and AI to enhance early diagnosis.
• Standardising Treatment Protocols: Developing and implementing standardised diagnostic and treatment pathways.
• Fostering Collaboration: Encouraging national and international collaboration through data sharing, standardised protocols, and multicentre studies.
• Enhancing Equity in Access to Care: Ensuring equitable access to diagnostic and treatment services across different regions.
• Collecting High-Quality Tissue Samples: Establishing a federated tissue banking system to facilitate research.
• Securing Funding for Research: Obtaining funding for pilot studies and larger grants to advance research efforts.
• Providing Psychosocial Support: Integrating psychosocial support services to address the emotional and psychological needs of patients and their families.

The actionable points identified during the workshop will guide future efforts in research and clinical practice, ultimately aiming to enhance patient outcomes and advance the field of sarcoma management.