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

NCT03440905 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 92

Last updated 2019-10-16

No results posted yet for this study

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, 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.

Conditions

  • Zellweger Spectrum

Sponsors & Collaborators

  • National Institutes of Health (NIH)

    collaborator NIH

  • Montclair State University

    collaborator OTHER

  • University of Nebraska

    collaborator OTHER

  • University of South Florida

    lead OTHER

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2018-01-29
Primary Completion
2018-11-30
Completion
2018-11-30

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT03440905 on ClinicalTrials.gov