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Institutional Registry of Rare Diseases
Sponsor: Hospital Italiano de Buenos Aires
Summary
The goal of this observational study is to create a single macro registry system with data collection on common clinical features, grouping the different rare diseases (RD). Moreover, the specific goals are to generate an alert system for possible cases of RD with data from the electronic medical record, to describe the occurrence of RD in the evaluated population, to characterize the population, to describe patterns of diagnosis and treatment of RD present at the time, and to explore patient-reported outcomes.
Official title: Institutional Registries of Rare Diseases at Hospital Italiano de Buenos Aires (HIBA)
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
380
Start Date
2024-07-01
Completion Date
2034-12-31
Last Updated
2026-01-14
Healthy Volunteers
No
Conditions
Locations (1)
Hospital Italiano de Buenos Aires
Buenos Aires, Buenos Aires, Argentina