Registry for Haemorrhagic Hereditary Telangiectasia
Institutional Registry of Haemorrhagic Hereditary Telangiectasia
This study is setting up a registry to collect information about people with Haemorrhagic Hereditary Telangiectasia in Argentina to better understand the condition and how it affects patients.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 590 (estimated) |
| Sex | All |
| Sponsor | Hospital Italiano de Buenos Aires Academic / other |
| Locations | 1 site (Buenos Aires, Buenos Aires) |
| Trial ID | NCT01761981 on ClinicalTrials.gov |
What this trial studies
This study aims to establish a registry for Haemorrhagic Hereditary Telangiectasia (HHT) to collect epidemiological data, risk factors, and clinical characteristics of the condition. It will involve a prospective survey to monitor diagnosis, prognosis, treatment, and survival rates among affected individuals. The registry will focus on the population served by the Hospital Italiano de Buenos Aires, providing valuable insights into the prevalence and clinical presentation of HHT in Argentina and Latin America.
Who should consider this trial
Good fit: Ideal candidates for this registry are patients diagnosed with Haemorrhagic Hereditary Telangiectasia who are being followed at the Unidad HHT of Hospital Italiano de Buenos Aires.
Not a fit: Patients who do not have a diagnosis of Haemorrhagic Hereditary Telangiectasia or who decline to participate in the registry will not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could enhance the understanding and management of HHT, leading to improved diagnosis and treatment options for patients.
How similar studies have performed: While there are no existing registries for HHT in Argentina or Latin America, similar registries in other regions have successfully contributed to better understanding and management of rare diseases.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. Patients with HHT defined. 2. Followed in Unidad HHT of Hospital Italiano de Buenos Aires. Exclusion Criteria: 1\. Denied to participated in the registry or inform consent process.
Where this trial is running
Buenos Aires, Buenos Aires
- Hospital Italiano de Buenos Aires — Buenos Aires, Buenos Aires, Argentina (Recruiting)
Study contacts
- Principal investigator: Marcelo M Serra, MD — HHT Center of Excelence Hospital Italiano de Buenos Aires
- Study coordinator: Marcelo M Serra, MD
- Email: marcelo.serra@hospitalitaliano.org.ar
- Phone: +541149590200
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.