Status:
COMPLETED
The Experience of Uncertainty in Parents of Children With an Undiagnosed Medical Condition
Lead Sponsor:
National Human Genome Research Institute (NHGRI)
Conditions:
Multiple Abnormalities
Eligibility:
All Genders
18-100 years
Brief Summary
Background: * Rare and undiagnosed conditions are often chronic and disabling, with symptoms affecting different organ systems at various levels of severity. Perhaps the most challenging feature of a...
Detailed Description
This study aims to understand the impact on parents of having a child with an undiagnosed medical condition and the factors that contribute to their adaptation. Rare and undiagnosed conditions are oft...
Eligibility Criteria
Inclusion
- INCLUSION CRITERIA:
- Men and women 18 years or older
- Biological or adoptive parent
- At least one child of participants has a medical problem or problems that have remained undiagnosed for \> 2 years
- The child with an undiagnosed medical problem must reside with the parent
- Read and write in English
- EXCLUSION CRITERIA:
- One parent/household may participate
Exclusion
Key Trial Info
Start Date :
August 4 2009
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
April 10 2012
Estimated Enrollment :
500 Patients enrolled
Trial Details
Trial ID
NCT00955370
Start Date
August 4 2009
End Date
April 10 2012
Last Update
July 2 2017
Active Locations (1)
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1
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, United States, 20892