High importance
Jul 30, 2026
To establish a comprehensive institutional and population-based registry for Haemorrhagic Hereditary Telangiectasia (HHT) to improve understanding of its epidemiology, risk factors, clinical presentation, and treatment outcomes.
A prospective survey will collect data on patients diagnosed with HHT, focusing on demographics, diagnosis, treatment approaches, prognosis, and survival rates within the registry framework at HIBA in the Central Hospital.
The study aims to identify the prevalence of HHT within the HIBA population, detailing clinical characteristics and disease progression patterns among affected individuals. Preliminary insights may reveal common complications such as arteriovenous malformations and responses to treatments like bevacizumab and pomalidomide.
Potential limitations include incomplete data collection due to low patient turnout or failure to capture all relevant clinical variables. There may also be challenges in generalizing findings due to the localized nature of the registry.
Establishing this registry is crucial for advancing the clinical management of HHT, enabling more effective monitoring, treatment plans, and targeted research, ultimately enhancing patient care and outcomes for those with this hereditary condition.
The purpose of this study is to create an institutional and population-based registry of Haemorrhagic Hereditary Telangiectasia with a prospective survey based on epidemiological data, risk factors, diagnosis, prognosis, treatment, monitoring and survival. This study will also describe the occurrence of Haemorrhagic Hereditary Telangiectasia in the population of HIBA in the Central Hospital, as well as the characteristics of clinical presentation and evolution.