Desmoplastic Small Round Cell TumorNCT04690374
Registry to Collect Health Information About Desmoplastic Small Round Cell Tumor
An observational study of Desmoplastic Small Round Cell Tumor, run by Memorial Sloan Kettering Cancer Center at 1 site in United States.
Trial summary
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. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Desmoplastic Small Round Cell Tumor
- How many people
- 250 participants
- Where
- 1 siteUnited States
- Study dates
- 22 Dec 2020to Dec 2027
- How long will I take part?
- 10 Years
- Phase
- Observational
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: The study is a registry protocol for patients with DSRCT.
Who may be able to join
- Participants must have a diagnosis of desmoplastic small round cell tumor
- Participants may be of any age as long as the appropriate consent and assent may be obtained
- Willing to provide historical and longitudinal clinical data
Who cannot join
- Participant unwilling to provide consent or share historical and longitudinal clinical data
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Shakeel Modak, MD contact
United States1 site, 1 recruiting
- Recruiting
Memorial Sloan Kettering Cancer Center (All Protocol Activities)
New York, New York, 10065
Emily Slotkin, MD, 833-675-5437
Shakeel Modak, MD, 1-833-675-5437
About this study
Official title: Registry for Patients With Desmoplastic Small Round Cell Tumor
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.
- Conditions
- Desmoplastic Small Round Cell Tumor
- Keywords
- Patient registry, 20-551
- Medical subject headings
- Desmoplastic Small Round Cell Tumor
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| 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 |
What is being measured
The primary outcome is the main question the study is designed to answer.
Registry to Collect Health Information About Desmoplastic Small Round Cell Tumor
The aim of this study is the collection of data.
Measured: 7 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted30 Dec 2020
- Study start22 Dec 2020
- Primary completionDec 2027 (estimated)
- Study completionDec 2027 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Desmoplastic Small Round Cell TumorStudies of the same condition, open and under way.
- More trials run by Memorial Sloan Kettering Cancer CenterThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Other
- Enrolment
- 250 participants (estimated)
- Target duration
- 10 Years
Sponsor and investigators
- Lead sponsor
- Memorial Sloan Kettering Cancer Center
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Emily Slotkin, MD, Principal investigator, Memorial Sloan Kettering Cancer Center
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT04690374
- Sponsor's protocol ID
- 20-551
- Status last verified
- Jan 2026
- First submitted
- 28 Dec 2020
- Last updated
- 12 Jan 2026
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: 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.