Synovial Sarcoma Registry / Biospecimen Repository

Last updated: May 30, 2025
Sponsor: Children's Hospital of Philadelphia
Overall Status: Active - Recruiting

Phase

N/A

Condition

Sarcoma

Sarcoma (Pediatric)

Infantile Fibrosarcoma

Treatment

N/A

Clinical Study ID

NCT05910307
23-021012
  • All Genders

Study Summary

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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  1. Males or females of any age

  2. Reported diagnosis of synovial sarcoma

  3. Informed consent from subject (aged ≥18 years) or parent/guardian

Exclusion

Exclusion Criteria:

  1. Individuals with sarcomas that do not fit the definition of those considered forthis registry

  2. Individuals who are unwilling to participate

  3. Individuals who are unwilling or unable to provide written consent

Study Design

Total Participants: 1000
Study Start date:
June 12, 2023
Estimated Completion Date:
June 30, 2033

Study 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.

Connect with a study center

  • Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania 19104
    United States

    Active - Recruiting

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