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Zellweger Spectrum clinical trials

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NCT ID: NCT03440905 Completed - Zellweger Spectrum Clinical Trials

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

Start date: January 29, 2018
Phase:
Study type: Observational

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.