Patient Unmet Needs
The National Leiomyosarcoma Foundation's Circle of Hope — the LMS / All Sarcoma Patient-Family / Patient Advocacy Foundations Community Roundtable
This is a Think Tank Network of patients and caregivers coming together to discuss experiences from initial diagnosis to the end of various treatments / clinical trials and beyond. Patient Advocacy foundations are also invited to participate.
We will collectively discuss what we have learned so far — identify and address the common challenges (unmet needs) in care and treatment from A to Z.
Announcing a New NLMSF Initiative for 2026
Circle of Hope
Community Roundtable / Clinical Trial Patient Perspectives
The National Leiomyosarcoma Foundation's Circle of Hope — the LMS / All Sarcoma Patient-Family / Patient Advocacy Foundations Community Roundtable.
This is a Think Tank Network of patients and caregivers coming together to discuss experiences from initial diagnosis to the end of various treatments / clinical trials and beyond. Patient Advocacy foundations are also invited to participate.
We will collectively discuss what we have learned so far — identify and address the common challenges (unmet needs) in care and treatment from A to Z.
Meetings are held quarterly throughout the year. Upcoming meeting announcements are posted on the NLMSF homepage.
Why Your Input Matters
- Clinicians and researchers value patient perspectives
- Your experiences inform treatment approaches and clinical trial design
- Patient voices help move care farther and faster
Key Learning Goals for the Clinical Trial Perspectives Roundtable Discussion
Participants should be able to:
- Better understand what it is really like to participate in a clinical trial from the patient and caregiver perspective.
- Learn how patients prepared before entering a trial and what they wish they had known earlier.
- Recognize common challenges that may arise during participation, including travel, scheduling, side effects, communication issues, financial stressors, and emotional impact.
- Hear positive insights and opportunities that trials may provide, including access to emerging therapies, expert care teams, closer monitoring, and contributing to future progress for other patients.
- Understand the importance of asking informed questions before enrolling in a study.
- Learn practical strategies for organization, advocacy, communication, and self-care throughout the trial experience.
- Gain perspective on how caregivers and family members can prepare for the responsibilities and stressors that often accompany participation.
What Patients & Caregivers Take Away
- 1
A Better Understanding of Clinical Trials
- Clinical trials are not only "last resort" options.
- They are essential for advancing treatments and creating future standards of care.
- 2
Confidence to Ask Questions
- Trial goals and what participation involves
- Potential risks and benefits
- Logistical requirements such as visits, travel, and time commitment
- How the trial may affect quality of life
- What support resources are available
- 3
Realistic Expectations
- What day-to-day life can look like during a trial
- Which challenges are common and often manageable
- What issues may arise unexpectedly
- How to prepare emotionally as well as logistically
- 4
The Importance of Support Systems
- Trials affect the entire family unit—not only the patient.
- Strong communication, organization, and emotional support matter throughout the experience.
- 5
Patients Are Partners in Research
- Patients and caregivers are active partners whose lived experience helps improve future trial design, patient support, and research priorities.
Join the Conversation
Questions about Circle of Hope, the Clinical Trials Patient-Caregiver Perspectives Network, or sharing unmet needs from your LMS journey? Reach out to the Foundation—your voice helps strengthen support and research for others.