An observational study in Hereditary Tyrosinemia, Type I, sponsored by Yassin Abdelghaffar Charity Center for Liver Disease and Research. Status unknown at 1 site in Egypt. Open to participants aged Up to 18 Years. Per ClinicalTrials.gov, last updated 2019-01-10.
Sponsored by Yassin Abdelghaffar Charity Center for Liver Disease and Research · Observational
The purpose of the registry/repository is to understand the natural history of tyrosinemia in our region and to provide a mechanism to store data and specimens to support the conduct of future research about hereditary tyrosinemia among the Arabs.
The purpose of this study is to create an electronic registry of phenotypic, laboratory information, treatment and outcomes options for tyrosinemia type I. The registry is longitudinal in nature including retrospective clinical data from birth to the most recent encounter with all data entered in chronological fashion. The goals of this registry are the better understanding of the natural history and treatment outcomes of these patients and to determine/evaluate biochemical and clinical parameters for monitoring and prognosis of tyrosinemia type I.
Patients with tyrosinemia type I seen by one of the participating sites.
Exclusion Criteria:
Create a registry for tyrosinemia type I.
This outcome is a binary 'yes/no' outcome as to whether or not this study can successfully create a repository with the intent to store data and specimens to support the conduct of future research on tyrosinemia type I.
Time frame: 5 Years
Plan to share: No
No publications or documents are linked to this record.
This study is status unknown, as verified in Jan 2019. You cannot join it, but the record below documents what was studied.
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Yassin Abdelghaffar Charity Center for Liver Disease and Research