Actively Recruiting

Age: 1Day - 100Years
All Genders
Healthy Volunteers
ID04717349

Data Collection Study of Pediatric and Adolescent Gynecology Conditions

Led by Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) · Updated on 2026-05-01

11000

Participants Needed

1

Research Sites

N/A

Total Duration

On this page

AI-Summary

What this Trial Is About

Researchers are gathering information over time from a large group of children, teenagers, and their adult family members who have known or suspected pediatric and adolescent gynecologic conditions. These conditions include reproductive gland disorders, tumors, and inborn anomalies of the reproductive tract. The purpose is to create a comprehensive database to better understand the variety and presentation of these conditions. Participants include those with gynecologic conditions and their family members. The study involves reviewing medical records, medical histories, and physical exams. Samples such as blood and saliva will be collected for genetic testing. Optional vaginal swabs and tissue samples from related surgeries may also be collected for future research. Participants may also choose to complete surveys about their physical and emotional health. During the study, researchers will collect medical data from routine tests like blood and urine tests, X-rays, and other standard procedures or treatments participants may receive. The study aims to recruit a diverse group and maintain ongoing data collection. Participation involves screenings, sample collections, surveys, and data gathering over time to build a detailed understanding of these gynecologic conditions.

CONDITIONS

Brief Title

Data Collection Study of Pediatric and Adolescent Gynecology Conditions

Who Can Participate

Age: 1Day - 100Years
All Genders
Healthy Volunteers

Eligibility Criteria

Eligible

You may qualify if you...

  • Signed and dated informed consent form is provided.
  • Willingness to comply with all study procedures and availability for the duration of the study.
  • Participants of any age with known or suspected pediatric and adolescent gynecologic conditions are eligible.
  • Adult relatives (18 years and older) of PAG patients may participate if clinically indicated for diagnosis of a proband.
Not Eligible

You will not qualify if you...

  • Any medical, physical, psychiatric, or social conditions that would make participation not in the patient's best interest.
  • Critically ill, unstable patients or those with severe organ failure that could limit evaluation or burden study resources.
  • Pregnant family members are excluded.

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Diagnostic Evaluation

Duration - Ongoing during study participation

Participants undergo clinical evaluations to collect data and specimens related to pediatric and adolescent gynecologic conditions.

Visits as needed for clinical evaluation and data collection

Long-term Monitoring

Duration - Up to study completion date in 2039

Participants are followed over time to contribute to a large database of pediatric and adolescent gynecologic conditions.

Periodic visits depending on clinical needs and study follow-up

Trial Site Locations

Total: 1 location

1

National Institutes of Health Clinical Center

Bethesda, Maryland, United States, 20892

Actively Recruiting

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Research Team

V

Veronica Gomez-Lobo, M.D.

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

2

Frequently Asked Questions

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