Ignite Creation Date:
2024-10-25 @ 8:03 PM
Last Modification Date:
2024-10-26 @ 3:38 PM
Study NCT ID:
NCT06573723
Status:
RECRUITING
Last Update Posted:
None
First Post:
2024-08-06
Brief Title:
Institutional Registry of Rare Diseases
Sponsor:
None
Organization:
None
Study Overview
Official Title:
Institutional Registries of Rare Diseases at Hospital Italiano de Buenos Aires HIBA
Status:
RECRUITING
Status Verified Date:
2024-09
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
No
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
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 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
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
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 makes it difficult to understand them comprehensively Therefore the creation of a macro institutional registry that brings together information on RD would facilitate research in this field
The registries are organized systems of systematic data collection of a large number of patients quickly and efficiently on a particular disease at a given time
The main difficulty of the registries is the guarantee of the quality of their data
The main objectives of the registry are
Understand risk factors and prognosis Evaluate the diagnostic and therapeutic comparison with current standards Advance knowledge of the disease to optimize the assessment treatment and monitoring of patients
Analyze the effectiveness of new therapies Studying differences between populations Quickly estimate the morbidity mortality and resource utilization associated with a disease entity
Examine the course of a disease Formulate novel hypotheses for further prospective studies
The fragmentation of data on these diseases makes it difficult to understand them comprehensively Therefore the creation of a macro institutional registry that brings together information on RD would facilitate research in this field
The registries are organized systems of systematic data collection of a large number of patients quickly and efficiently on a particular disease at a given time
The main difficulty of the registries is the guarantee of the quality of their data
The main objectives of the registry are
Understand risk factors and prognosis Evaluate the diagnostic and therapeutic comparison with current standards Advance knowledge of the disease to optimize the assessment treatment and monitoring of patients
Analyze the effectiveness of new therapies Studying differences between populations Quickly estimate the morbidity mortality and resource utilization associated with a disease entity
Examine the course of a disease Formulate novel hypotheses for further prospective studies
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None