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NCT04717349

Data Collection Study of Pediatric and Adolescent Gynecology Conditions

Recruiting now Last updated 9 April 2026
What this trial tests

trial in Disorders of Sex Development (DSD) in 11,000 participants. Currently enrolling.

Timeline
21 April 2021
Primary endpoint
2 December 2039
2 December 2039

Quick facts

Lead sponsorEunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
StatusRecruiting now
Study typeOBSERVATIONAL
Enrollment11,000
Start date21 April 2021
Primary completion2 December 2039
Estimated completion2 December 2039
Sites1 location across United States

Conditions studied

Sponsor

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Who can join

Adults 1 Day to 100, any sex, with Disorders of Sex Development (DSD) or Pediatric and Adolescent Cancers of the Genital Tract. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

Background: Gynecologic conditions are those that are related to the reproductive system. They can be reproductive gland disorders or reproductive system tumors. They can also be inborn anomalies of the reproductive tract. Researchers want to gather data over time from a large group of young people with these conditions. Objective: To create a database about child and teenage gynecologic conditions. Eligibility: Participants of any age with known or suspected pediatric and adolescent gynecologic conditions, and their adult family members Design: Participants will be screened with a review of their medical records. Participants may have a medical history and physical exam. Participants will have blood drawn using a needle. The blood will be used for genetic tests. Participants will have saliva collected. They will spit into a small plastic container. Or their spit will be absorbed from their mouth using a small sponge. The saliva will be used for genetic tests. Participants may have samples collected from their vagina. A small cotton swab will be used to gather the samples. This procedure is optional. If participants have a surgery related to their condition, a small tissue sample will be taken. It will be stored for future research. Participants may complete optional surveys. These surveys ask about their physical and emotional health. They can choose not to answer any of the questions. Researchers will collect medical data from participants standard tests. Such tests may include blood and urine tests, X-rays, nuclear medicine scans, and other tests. Data will also be collected from standard treatments they may receive.

Publications & conference data

No peer-reviewed publications indexed yet for this trial.

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Other Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) trials

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Data sources for this page

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