Status:
COMPLETED
Decision Support for Parents Receiving Information About Child's Rare Disease
Lead Sponsor:
University of Michigan
Collaborating Sponsors:
Patient-Centered Outcomes Research Institute
Virginia Commonwealth University
Conditions:
Disorder of Sex Development
Intersex Conditions
Eligibility:
All Genders
Brief Summary
The birth of a child with a disorder of sex development (DSD) is stressful for parents and members of the healthcare team. The "right" decisions about gender assignment (is it a boy? a girl?) and the ...
Eligibility Criteria
Inclusion
- Must be a parent/caregiver of a patient who is newborn through 5 years old (i.e., 5.9 yrs).
- Patient clinical diagnosis of ambiguous genitalia (eg, 46,XX,Prader 2+; proximal hypospadias with uni/bilateral undescended testes) or sex chromosomes discordant with genital phenotype.
- Condition must be newly ascertained where decisions regarding surgical procedures (internal or external genitalia), diagnostic testing, and/or other aspects of clinical management have yet to be made.
Exclusion
- Turner syndrome, Klinefelter syndrome, bladder or cloacal exstrophy.
Key Trial Info
Start Date :
June 1 2013
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
December 1 2017
Estimated Enrollment :
63 Patients enrolled
Trial Details
Trial ID
NCT01875640
Start Date
June 1 2013
End Date
December 1 2017
Last Update
May 8 2024
Active Locations (4)
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1
University of California Los Angeles
Los Angeles, California, United States, 90095
2
University of Michigan
Ann Arbor, Michigan, United States, 48104
3
Temple University
Philadelphia, Pennsylvania, United States, 19122
4
Seattle Children's Hospital
Seattle, Washington, United States, 98105