Status:

COMPLETED

The Role of Uncertainty in Coping: The Experience of Parents of Children With Undiagnosed Medical Conditions

Lead Sponsor:

National Human Genome Research Institute (NHGRI)

Collaborating Sponsors:

University of Virginia

Conditions:

Undiagnosed Disease

Eligibility:

All Genders

18-115 years

Brief Summary

Background: \- Parents of a child with an undiagnosed medical condition face a lot of uncertainty. They may not know how to take care of their child or how the illness will affect their family life. ...

Detailed Description

The proposed study aims to test the effect of the degree of perceived uncertainty on coping efficacy among parents of children with undiagnosed medical conditions. There are many dimensions to uncerta...

Eligibility Criteria

Inclusion

  • Participants for this study will be English speaking men and women ages 18 years or older who have a child with an undiagnosed medical condition who have applied to the Undiagnosed Diseases Network, and have been assigned to the NIH.
  • The participant may be the adoptive or biological parent.
  • Parents may decide between themselves who will complete the survey as only one survey per household will be allowed.

Exclusion

    Key Trial Info

    Start Date :

    June 12 2013

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ACTUAL

    End Date :

    Estimated Enrollment :

    168 Patients enrolled

    Trial Details

    Trial ID

    NCT01905865

    Start Date

    June 12 2013

    Last Update

    January 8 2026

    Active Locations (1)

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    Page 1 of 1 (1 locations)

    1

    National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

    Bethesda, Maryland, United States, 20892