RecruitingNCT06573723

Institutional Registry of Rare Diseases

Institutional Registries of Rare Diseases at Hospital Italiano de Buenos Aires (HIBA)


Sponsor

Hospital Italiano de Buenos Aires

Enrollment

380 participants

Start Date

Jul 1, 2024

Study Type

OBSERVATIONAL

Conditions

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.


Eligibility

Plain Language Summary

Simplified for easier understanding

This is a registry study that collects data on patients with rare diseases who are being treated at Hospital Italiano de Buenos Aires in Argentina. It is designed to help researchers better understand how these rare conditions behave and respond to treatment over time. **You may be eligible if...** - You have been diagnosed with any of a range of rare diseases, including amyloidosis, sarcoidosis, Gaucher disease, pulmonary hypertension, hereditary angioedema, multiple endocrine neoplasia, Wilson disease, Cushing syndrome, Prader-Willi syndrome, and others - You are currently being followed at Hospital Italiano de Buenos Aires **You may NOT be eligible if...** - You refuse to participate or do not wish to go through the informed consent process - You are not a patient at Hospital Italiano de Buenos Aires Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(1)

Hospital Italiano de Buenos Aires

Buenos Aires, Buenos Aires, Argentina

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NCT06573723


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