Proxy-Reported Symptoms and Quality of Life Survey in Zellweger Spectrum Disorders

Completed

Conditions studied: Zellweger Spectrum

In brief

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, stepparents, legal guardians) of patients diagnosed with ZSD or a related peroxisome disorder. All family caregivers of patients enrolled in the Rare Diseases Clinical Research Network (RDCRN) Contact Registry who are diagnosed with ZSD or a related peroxisome disorder will be invited via email to participate in this study.

Key facts

Study ID

NCT03440905

Run by

University of South Florida

People needed

92

Starts

2018-01-29

Expected to finish

2018-11-30

Last updated by the study team

2019-10-16

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• 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

You may not qualify if…

• 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

Where it is running

• University of South Florida — Tampa, Florida, United States

Full record on ClinicalTrials.gov

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