CClinicalTrials.gg
RecruitingNCT01761981Updated Jul 30, 2026

Institutional Registry of Haemorrhagic Hereditary Telangiectasia

An observational study in Haemorrhagic Hereditary Telangiectasia, sponsored by Hospital Italiano de Buenos Aires. Recruiting at 1 site in Argentina. Per ClinicalTrials.gov, last updated 2026-07-30.

Sponsored by Hospital Italiano de Buenos Aires · Observational

Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
590
Sex
All
01

Study 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.

Read the detailed description

Haemorrhagic Hereditary Telangiectasia is a uncommon autosomic hereditary disorder caracterizad for recurrent epistaxis,cutaneomucous telangiectasias and arteriovenous malformations in diferent organs; brain, lung, liver and gastrointestinal are more often afected . Afect one in 5000-8000 individual in worldwide. HHT may produce important morbidity like brain absces, stroke, hemoptisis and cronic ferropenic anemia.

Molecular mechanism of this disorder are complex and still no fully dilucidated. The genes mutated in HHT encode endothelial cell-expressed proteins that mediate signalling by the transforming growth factor (TGF)b superfamily. Endoglin (HHT type I) and ACVRL-1 (HHT type 2) mutations are responsible in more than 80% of the individuals. Mutation of SMAD 4 protein (MADH4)cause HHT in association with juvenile polyposis. HHT may associated with primary pulmonary hypertension en more rare cases.

There are not HHT registry in Argentina and Latinamerican population. This registry may gader valious information in order to generate a better diagnosis and treatment of our population and others.

02

Conditions studied

  • Haemorrhagic Hereditary Telangiectasia

Keywords

  • Haemorrhagic Hereditary Telangiectasia
  • Rendu Osler Weber Syndrome
  • Osler Weber Rendu Syndrome
  • HHT
03

Who can participate

Ages eligible
Child (0–17), Adult (18–64), Older adult (65+)
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Probability sample

Study population

Patients with Haemorrhagic Hereditary Telangiectasia

Inclusion criteria

  1. Patients with HHT defined.
  2. Followed in Unidad HHT of Hospital Italiano de Buenos Aires.

Exclusion criteria

Exclusion Criteria:

1. Denied to participated in the registry or inform consent process.

04

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
590 participants (estimated)
05

What researchers measure

Primary outcomes

  1. morbidity

    Control visit every three month

    Time frame: 1 year

06

Study locations

1 of 1 sites recruiting
07

References and documents

Publications

  • 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. PubMed 28521822 ↗
08

Registry details

Key details

Study ID
NCT01761981
Lead sponsor
Hospital Italiano de Buenos Aires
Responsible party
MARCELO MARTIN SERRA (Marcelo Martin Serra, Hospital Italiano de Buenos Aires) — Principal investigator
First posted
Jan 7, 2013
Start date
Jan 1, 2010
Primary completion
May 19, 2025
Completion
Dec 2035 (estimated)
Last update
Jul 30, 2026

Study contacts

Marcelo M Serra, MD
Contact
marcelo.serra@hospitalitaliano.org.ar
+541149590200 ext. 4419
Diego H Giunta, MD
Contact
diego.giunta@hospitalitaliano.org.ar
+541149590200 ext. 4419
Marcelo M Serra, MD
principal investigator · HHT Center of Excelence Hospital Italiano de Buenos Aires

Oversight

Data monitoring committee
No
View the source record on ClinicalTrials.gov ↗

Interested in this study?

Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.

Contact study team

Follow this study

Get an email when the registry record changes — status, dates, results — or when someone posts here.

Sign in to follow

Discussion

Questions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.

Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.

Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.

Start the discussion