Status:
COMPLETED
Proxy-Reported Symptoms and Quality of Life Survey in Zellweger Spectrum Disorders
Lead Sponsor:
University of South Florida
Collaborating Sponsors:
National Institutes of Health (NIH)
Montclair State University
Conditions:
Zellweger Spectrum
Eligibility:
All Genders
18+ years
Brief Summary
The purpose of this study is to characterize the symptoms of Zellweger Spectrum Disorder (ZSD) and related peroxisome disorders, and to assess the quality of life of family caregivers (parents, steppa...
Detailed Description
A total of three online surveys will be provided to each family caregiver that fits the inclusion criteria and is enrolled in the RDCRN STAIR Contact Registry. All three surveys should take approximat...
Eligibility Criteria
Inclusion
- Family caregiver (parents, stepparents, legal guardians) of child (living or deceased) diagnosed with ZSD, acyl CoA oxidase (ACOX) deficiency or D-bifunctional protein deficiency (DBPD)
- Family caregiver is able to complete surveys
Exclusion
- Inability of family caregiver to provide informed consent and complete survey
- Parents/primary caregivers of children who have not been diagnosed with ZSD, acyl CoA oxidase deficiency and D-bifunctional protein deficiency
Key Trial Info
Start Date :
January 29 2018
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
November 30 2018
Estimated Enrollment :
92 Patients enrolled
Trial Details
Trial ID
NCT03440905
Start Date
January 29 2018
End Date
November 30 2018
Last Update
October 16 2019
Active Locations (1)
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1
University of South Florida
Tampa, Florida, United States, 33512