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Institutional Registry of Rare Diseases

StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. Study sites: 3 to 1v3
  2. Eligibility criteria expanded, about 23 wordsv2
  3. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
Hospital Italiano de Buenos Aires
25 trials monitored
See 1 trial at risk
Heart Disease
8,786 trials monitored
See 412 trials at risk
Obesity
3,874 trials monitored
See 152 trials at risk
Hypertension
1,925 trials monitored
See 99 trials at risk
and 2 more diseases
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.
Trial Details
NCT Number NCT06573723
Lead Sponsor Hospital Italiano de Buenos Aires
Conditions
(from sponsor)		 Rare Diseases, Amyloidosis, Sarcoidosis, Phacomatosis, Pheochromocytoma, Paraganglioma, Von Hippel-Lindau Disease, Immunoglobulin G4-Related Disease +18 more
Related terms Adrenal Hyperplasia, Congenital, Amyloidosis, Angioedemas, Hereditary, Cardiomyopathy, Hypertrophic, Cushing Syndrome, Demyelinating Diseases, Eosinophilic Esophagitis, Gaucher Disease, Hepatolenticular Degeneration, Hirschsprung Disease, Hypertension, Pulmonary, Immunoglobulin G4-Related Disease, Inflammatory Bowel Diseases, Mastocytosis, Metabolism, Inborn Errors, Multiple Endocrine Neoplasia, Neurocutaneous Syndromes, Paraganglioma, Pheochromocytoma, Prader-Willi Syndrome, Rare Diseases, Sarcoidosis, Telangiectasia, Hereditary Hemorrhagic, Vascular Malformations, von Hippel-Lindau Disease
Enrollment 380 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov