This study collects health information to create a patient registry about desmoplastic small round cell tumor. A patient registry is a collection of health information about a group of people, and it is usually focused on a specific diagnosis or disease. The purpose of this study is to create a database, a collection of information, to better understand desmoplastic small round cell tumor. Information from this database may help researcher learn more about desmoplastic small round cell tumor and may be used for current and future research on desmoplastic small round cell tumor.
Study sponsor and potential other locations can be found on ClinicalTrials.gov for NCT04690374.
Locations matching your search criteria
United States
New York
New York
Memorial Sloan Kettering Cancer CenterStatus: Active
Contact: Emily Kanaya Slotkin
Phone: 212-639-8856
PRIMARY OBJECTIVES:
I. Collect historical/longitudinal clinical, radiographic and molecular features of desmoplastic small round cell tumor (DSRCT) patients as documented in medical records to improve knowledge about DSRCT.
II. improve epidemiologic knowledge about DSRCT.
IIa. Estimate the national and international incidence of DSRCT.
IIb. Elucidate any racial, ethnic, or geographic patterns related to incidence.
III. Catalogue information regarding presentation.
IIIa. Catalogue sites of disease at presentation.
IIIb. Catalogue symptoms at presentation.
IIIc. Evaluate proposed staging systems using larger sets of data regarding presentation.
IV. Catalogue molecular features of DSRCT.
IVa. Catalogue presence of pathognomic fusion and its type.
IVb. Catalogue methods of documenting fusion and other molecular analyses performed.
IVc. Catalogue molecular findings in addition to pathognomonic fusion.
V. Catalogue information regarding treatment.
Va. Catalogue upfront treatment regimens and response rates.
Vb. Catalogue salvage treatment regimens and response rates.
VI. Catalogue information regarding surgical resection.
VIa. Estimate the percentage of patients able to achieve gross total resection.
VIb. Catalogue surgical complications.
VII. Catalogue information regarding radiation therapy.
VIIa. Catalogue type of radiation therapy and doses.
VIIb. Catalogue response to radiation therapy.
VIII. Catalogue information regarding non-surgical local control modalities.
VIIIa. Estimate the percentage of patients undergoing non-surgical local control modalities.
VIIIb. Catalogue the response to non-surgical local control modalities.
IX. Catalogue information regarding progression free and overall survival rates.
OUTLINE:
Patients medical records are reviewed at baseline, after 6 and 12 months, and then every year for up to 10 years for creation of a registry.
Trial PhaseNo phase specified
Trial TypeNot provided by clinicaltrials.gov
Lead OrganizationMemorial Sloan Kettering Cancer Center
Principal InvestigatorEmily Kanaya Slotkin
