IBD (general)Recruiting
Institutional Registry of Rare Diseases
Observational · No treatment assigned · 1 site · Hospital Italiano de Buenos Aires
Official record & contacts on ClinicalTrials.gov ↗
In plain English
What this trial is testing
Condition(s) listed: Rare Diseases, Amyloidosis and Sarcoidosis. This is an observational study: researchers collect information (for example questionnaires, samples, or scans) but the study does not assign a treatment.
Who can join
- Age range not stated in the record
- Any sex
Some of the main requirements, copied from the record:
- 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,…
- Must be followed at Hospital Italiano de Buenos Aires.
There are also 1 reasons someone might not be able to join (exclusion criteria). Only the trial team can confirm whether you qualify.
What's involved
- About 380 participants are expected to take part.
- Start date: 2024-07-01.
- Main results expected around 2034-12-31 (estimate from the record).
- 1 study site listed (1 marked recruiting) in Argentina.
Main thing being measured
- Overall Survival Rate (From date of enrollment/ diagnosis until the date of death/ last follow up, assessed up to 5 years.)
In the researchers’ words
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…
This is a short automatic summary built from the official record. A fuller plain-English card is coming; until then, please read the official record.
Questions to ask your doctor and the trial team
- Am I likely to qualify, given my health history?
- What would I have to do, and how often would I need to visit?
- Could I get a placebo? What happens to my current treatment?
- What are the possible risks and benefits?
- Are travel or other costs covered?
- What happens after the trial ends?
Official details
| Status | Recruiting |
|---|---|
| Phase | Observational |
| Study type | Observational |
| Conditions | 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; Cushing Syndrome; HHT; Hemorrhagic Hereditary Telangiectasia |
| Lead sponsor | Hospital Italiano de Buenos Aires |
| Enrollment | 380 (estimated) |
| Start date | 2024-07-01 |
| Primary completion (est.) | 2034-12-31 |
| First posted | 2024-08-27 |
| Last updated | 2026-01-14 |
| Official title | Institutional Registries of Rare Diseases at Hospital Italiano de Buenos Aires (HIBA) |
| ClinicalTrials.gov ID | NCT06573723 |
Interventions
- None listed
Full eligibility criteria (from the record)
Inclusion Criteria: * 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 Criteria: \- Refusal to participate in the study or in the informed consent process.
Locations (1)
| Site | City | Country | Site status |
|---|---|---|---|
| Hospital Italiano de Buenos Aires | Buenos Aires, Buenos Aires | Argentina | Recruiting |
For contacts at each site, use the official record.
Information only, not medical advice. Talk to your doctor and the trial team before making any decision about a clinical trial.