ClinicalTrials.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

From the registry’s dates

  • Started Jan 2010; still recruiting 16 years 10 months later.
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
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In context

Telangiectasia, Hereditary Hemorrhagic

106 studies on the registry are indexed under Telangiectasia, Hereditary Hemorrhagic; 24 are open to participants now.

This study's planned enrollment of 590 is above the median of 207 across 41 observational studies indexed under Telangiectasia, Hereditary Hemorrhagic.

Browse Telangiectasia, Hereditary Hemorrhagic studies →

Lead sponsor

Hospital Italiano de Buenos Aires is the lead sponsor of 133 studies on the registry; 24 are open to participants now.

Counted across the registry records on this site, refreshed daily.

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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

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

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.

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Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
590 participants (estimated)
06

What researchers measure

Primary outcomes

  1. morbidity

    Control visit every three month

    Time frame: 1 year

07

Study locations

1 of 1 sites recruiting
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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 ↗
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Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reachedSimilar studies: half by the dot; the band is the middle halfHalf of similar studies reached it by the dot; the band is the middle half, from a quarter to three quarters

Ran from Jan 2010 to primary completion in May 2025, 184 months.

Of 23 observational studies under Telangiectasia, Hereditary Hemorrhagic, half reached primary completion within 56 months of starting (the median), counting those still running; a quarter within 36 and three quarters within 184. This study's 184 months is above that.

How these figures are worked out, and which studies are left out of them.

Registered
Jan 3, 2013
First posted
Jan 7, 2013
StartActual
Jan 1, 2010
Primary completionActual
May 19, 2025
CompletionEst.
Dec 2035
Last update
Jul 30, 2026
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Jul 30, 2026, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
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Registry details

Key details

Study ID
NCT01761981
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 ↗

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