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A rare bleeding disorder under the microscope: what can a patient registry reveal?

NCT ID NCT01761981

Knowledge-focused Sponsor: Hospital Italiano de Buenos Aires Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 30, 2026 · Last updated Jul 31, 2026 · Updated 1 time

Summary

This study creates a detailed registry of people with hereditary hemorrhagic telangiectasia (HHT), a condition that causes abnormal blood vessels and bleeding. Researchers will track participants over time to collect information on symptoms, treatments, and disease progression. The goal is to better understand how HHT affects patients and to identify patterns that could improve future care.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could provide a clearer picture of how HHT progresses and what factors influence outcomes, potentially guiding future treatments.
What could go wrong
As an observational registry, this study does not test any new treatment, so it will not directly improve care. Results depend on consistent data collection and may not apply to all HHT patients.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 590 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jan 2010

Expected to finish

Dec 2035

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with Haemorrhagic Hereditary Telangiectasia

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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.

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Conditions

The condition(s) this trial relates to.

hereditary hemorrhagic telangiectasia

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Haemorrhagic hereditary telangiectasia

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Hospital Italiano de Buenos Aires

    RECRUITING

    Buenos Aires, Buenos Aires, 1081, Argentina