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This study is a patient registry of people with Desmoplastic Small Round Cell Tumor (DSRCT). 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 registry is to create a database- a collection of information-or better understanding DSRCT. Researchers will use the information from this database to learn more about DSRCT and for current and future research on DSRCT.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Desmoplastic small round cell tumor (DSRCT) | Collect historical/longitudinal clinical, radiographic and molecular features of DSRCT patients as documented in medical records to improve knowledge about DSRCT |
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| Measure | Description | Time Frame |
|---|---|---|
| Registry to Collect Health Information About Desmoplastic Small Round Cell Tumor | The aim of this study is the collection of data. | 7 years |
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Inclusion Criteria:
Exclusion Criteria:
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The study is a registry protocol for patients with DSRCT.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Emily Slotkin, MD | Contact | 1-833-675-5437 | slotkine@mskcc.org | |
| Shakeel Modak, MD | Contact | 1-833-675-5437 |
| Name | Affiliation | Role |
|---|---|---|
| Emily Slotkin, MD | Memorial Sloan Kettering Cancer Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Memorial Sloan Kettering Cancer Center (All Protocol Activities) | Recruiting | New York | New York | 10065 | United States |
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| Label | URL |
|---|---|
| Memorial Sloan Kettering Cancer Center | View source |
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Memorial Sloan Kettering Cancer Center supports the international committee of medical journal editors (ICMJE) and the ethical obligation of responsible sharing of data from clinical trials. The protocol summary, a statistical summary, and informed consent form will be made available on clinicaltrials.gov when required as a condition of Federal awards, other agreements supporting the research and/or as otherwise required. Requests for deidentified individual participant data can be made beginning 12 months after publication and for up to 36 months post publication. Deidentified individual participant data reported in the manuscript will be shared under the terms of a Data Use Agreement and may only be used for approved proposals. Requests may be made to: crdatashare@mskcc.org.
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| ID | Term |
|---|---|
| D058405 | Desmoplastic Small Round Cell Tumor |
| ID | Term |
|---|---|
| D012509 | Sarcoma |
| D018204 | Neoplasms, Connective and Soft Tissue |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
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