Institutional Registry of Haemorrhagic Hereditary Telangiectasia
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ClinicalTrials.gov Identifier: NCT01761981 |
Recruitment Status : Unknown
Verified December 2015 by Diego Hernan Giunta, MD, Hospital Italiano de Buenos Aires.
Recruitment status was: Recruiting
First Posted : January 7, 2013
Last Update Posted : December 17, 2015
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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.
Condition or disease |
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Haemorrhagic Hereditary Telangiectasia |
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 arent HHT register 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.
Study Type : | Observational |
Estimated Enrollment : | 250 participants |
Observational Model: | Cohort |
Time Perspective: | Prospective |
Official Title: | Institutional Registry of Haemorrhagic Hereditary Telangiectasia |
Study Start Date : | June 2012 |
Estimated Primary Completion Date : | June 2017 |
Estimated Study Completion Date : | December 2017 |

- morbidity [ Time Frame: 1 year ]Control visit every three month

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Ages Eligible for Study: | Child, Adult, Older Adult |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Probability Sample |
Inclusion Criteria:
- Patients with HHT defined.
- Followed in Unidad HHT of Hospital Italiano de Buenos Aires.
Exclusion Criteria:
1. Denied to participated in the registry or inform consent process.

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01761981
Contact: Marcelo M Serra, MD | +541149590200 ext 4419 | marcelo.serra@hospitalitaliano.org.ar | |
Contact: Diego H Giunta, MD | +541149590200 ext 4419 | diego.giunta@hospitalitaliano.org.ar |
Argentina | |
Hospital Italiano de Buenos Aires | Recruiting |
Buenos Aires, Argentina, 1081 | |
Contact: Marcelo M Serra, MD +541149590200 ext 4419 marcelo.serra@hospitalitaliano.org.ar | |
Contact: Diego H Giunta, MD +541149590200 ext 4419 diego.giunta@hospitalitaliano.org.ar |
Principal Investigator: | Marcelo M Serra, MD | HHT Center of Excelence Hospital Italiano de Buenos Aires |
Responsible Party: | Diego Hernan Giunta, MD, Marcelo Martin Serra, Hospital Italiano de Buenos Aires |
ClinicalTrials.gov Identifier: | NCT01761981 |
Other Study ID Numbers: |
1900 |
First Posted: | January 7, 2013 Key Record Dates |
Last Update Posted: | December 17, 2015 |
Last Verified: | December 2015 |
Haemorrhagic Hereditary Telangiectasia Rendu Osler Weber Syndrome Osler Weber Rendu Syndrome HHT |
Telangiectasis Vascular Diseases Cardiovascular Diseases |