Status:
RECRUITING
Institutional Registry of Rare Diseases
Lead Sponsor:
Hospital Italiano de Buenos Aires
Conditions:
Rare Diseases
Amyloidosis
Eligibility:
All Genders
Brief 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 go...
Detailed Description
Rare Diseases (RD) pose a health challenge due to their complexity and low prevalence, generating a burden in terms of morbidity and mortality and costs. The fragmentation of data on these diseases m...
Eligibility Criteria
Inclusion
- Clinical and/or molecular diagnosis of any of the following rare diseases: Amyloidosis, Sarcoidosis, Phacomatosis, Pheochromocytoma, Paraganglioma, Von Hippel-Lindau Disease, Immunoglobulin G4-Related Disease, Demyelinating Diseases, Inborn Errors of Metabolism, Eosinophilic Gastrointestinal Disorders, Hypertrophic Cardiomyopathy, Gaucher Disease, Congenital Adrenal Hyperplasia, Hereditary Angioedema, Pulmonary Hypertension, Wilson Disease, Vascular Anomalies, Mastocytosis, Multiple Endocrine Neoplasia, Inflammatory Bowel Diseases, Prader-Willi Syndrome, Hirschsprung Disease, or Cushing Syndrome.
- Must be followed at Hospital Italiano de Buenos Aires.
Exclusion
- \- Refusal to participate in the study or in the informed consent process.
Key Trial Info
Start Date :
July 1 2024
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
December 31 2034
Estimated Enrollment :
380 Patients enrolled
Trial Details
Trial ID
NCT06573723
Start Date
July 1 2024
End Date
December 31 2034
Last Update
September 19 2024
Active Locations (3)
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1
Hospital Italiano de Buenos Aires
Buenos Aires, Argentina, C1199ABB
2
Hospital Italiano de Buenos Aires
Buenos Aires, Argentina, C1199ABB
3
Hospital Italiano de Buenos Aires
Buenos Aires, Argentina, C1199