The purpose of this study is to collect and store data and samples for future research to attempt to improve outcomes for patients with synovial sarcoma. The future research will involve various types of genetic testing.
Participants will be asked to allow access to medical records and leftover tumor tissue and may be asked to give a blood or saliva sample. Participants will also be asked to completed questionnaires about their medical history and may be contacted every 6 to 12 months for updates for up to 10 years.
Who can participate
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion criteria
. Males or females of any age
. Reported diagnosis of synovial sarcoma
. Informed consent from subject (aged ≥18 years) or parent/guardian
Exclusion criteria
. Individuals with sarcomas that do not fit the definition of those considered for this registry
. Individuals who are unwilling to participate
. Individuals who are unwilling or unable to provide written consent
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this trial is a registry and biospecimen repository rather than a treatment study, what would actually happen to my tissue or blood samples, and how might contributing to this registry help future synovial sarcoma patients down the line?
2Because synovial sarcoma is so rare, my doctor mentioned that registries like this help researchers understand the disease better — could participating in this registry conflict in any way with my current or planned treatment?
3What kind of personal or medical information would be collected about me as part of this registry, and how would my privacy and data be protected over time?
4Given that this is not a Phase 1, 2, or 3 treatment trial but a data-collection effort, is there any direct benefit to me personally, or is the contribution mainly to help build knowledge about how many people are affected by synovial sarcoma?
5Are there other synovial sarcoma-specific treatment trials or registries I should also know about, and would enrolling in this registry affect my eligibility for those?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.