Institutional Registry of Haemorrhagic Hereditary Telangiectasia
1 other identifier
observational
590
1 country
1
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jan 2010
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
January 1, 2010
CompletedFirst Submitted
Initial submission to the registry
January 3, 2013
CompletedFirst Posted
Study publicly available on registry
January 7, 2013
CompletedPrimary Completion
Last participant's last visit for primary outcome
May 19, 2025
CompletedStudy Completion
Last participant's last visit for all outcomes
December 1, 2035
ExpectedMay 22, 2025
May 1, 2025
15.4 years
January 3, 2013
May 19, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
morbidity
Control visit every three month
1 year
Eligibility Criteria
Patients with Haemorrhagic Hereditary Telangiectasia
You may qualify if:
- Patients with HHT defined.
- Followed in Unidad HHT of Hospital Italiano de Buenos Aires.
You may not qualify if:
- \. Denied to participated in the registry or inform consent process.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Hospital Italiano de Buenos Aires
Buenos Aires, Buenos Aires, 1081, Argentina
Related Publications (1)
Serra MM, Besada CH, Cabana Cal A, Saenz A, Stefani CV, Bauso D, Golimstok AB, Bandi JC, Giunta DH, Elizondo CM. Central nervous system manganese induced lesions and clinical consequences in patients with hereditary hemorrhagic telangiectasia. Orphanet J Rare Dis. 2017 May 18;12(1):92. doi: 10.1186/s13023-017-0632-2.
PMID: 28521822DERIVED
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Marcelo M Serra, MD
HHT Center of Excelence Hospital Italiano de Buenos Aires
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Marcelo Martin Serra
Study Record Dates
First Submitted
January 3, 2013
First Posted
January 7, 2013
Study Start
January 1, 2010
Primary Completion
May 19, 2025
Study Completion (Estimated)
December 1, 2035
Last Updated
May 22, 2025
Record last verified: 2025-05
Data Sharing
- IPD Sharing
- Will not share