Synovial Sarcoma Registry / Biospecimen Repository
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Synovial Sarcoma. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Synovial Sarcoma Registry and Biospecimen Repository
Overview
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.
Detailed description
This study will enroll patients with a diagnosis of Synovial Sarcoma.
Following consent, demographic, clinical, treatment and outcome data will be collected from an interview and/or online survey. This will include a request for contact information for the subject's treating hospitals/physicians and a release of records request to obtain medical records.
At approximately 6-12 month intervals for up to 10 years after initial diagnosis and/or relapse, subjects and/or their treating hospitals may be contacted to provide updates on treatment and outcomes.
Tumor samples may be collected from residual material obtained during clinically indicated procedures occurring before or after consent to this study. No additional material will be collected or procedures performed solely for the purpose of this study.
Blood may be collected at the participant's local institution at the time of a clinically indicated blood draw and/or saliva or a buccal swab may be collected as a germline sample and for analysis of circulating free DNA (cfDNA) and/or circulating tumor cells (CTCs).
Genetic testing may be performed on tumor and germline samples submitted by subjects. Results will only be returned if deemed clinically significant.
Primary outcome measures
- Number of patients with synovial sarcoma [Time frame: Up to 10 years]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Other
Study locations
United States · 1 center
- Children's Hospital of Philadelphia — Philadelphia
Identifiers
NCT: NCT05910307 · 23-021012