An observational study in Hereditary Hemorrhagic Telangiectasia, sponsored by University Hospital, Essen. Enrolling by invitation at 1 site in Germany. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2025-03-30.
Sponsored by University Hospital, Essen · Observational
Help build ClinicalTrials.gg — short surveys, remote interviews or testing, in your language. Take part →
Among 10 studies in Telangiectasia, Hereditary Hemorrhagic with a site in Germany — 4 open to participants now, 6 under way, 1 of them phase 3. Telangiectasia, Hereditary Hemorrhagic · Germany.
Among the 10 studies in Telangiectasia, Hereditary Hemorrhagic with a site in Germany, this one is one of 2 that started in 2024, is one of 6 observational ones, and was the 7th registered.
106 studies on the registry are indexed under Telangiectasia, Hereditary Hemorrhagic; 24 are open to participants now.
Browse Telangiectasia, Hereditary Hemorrhagic studies →4 of the 10 studies in Telangiectasia, Hereditary Hemorrhagic with a site in Germany are open now. Recruiting first, the newest first:
Vaderis Therapeutics AG · Sites in Germany, United States, Belgium and 6 more countries
Ages 18+
University Hospital, Essen · Sites in Germany
Ages 18+
University Hospital, Essen · Sites in Germany
Ages 18+ · Healthy volunteers
A study can be open while its sites in Germany have not opened yet or have stopped. Only those recruiting at a site in Germany →
Of the 17 Telangiectasia, Hereditary Hemorrhagic studies recruiting now, 14 (82%) set no upper age limit and 2 (12%) stop at 75 or younger; 6 take children under 18; 3 take healthy volunteers.
This study: 18 Years and older · all sexes · no healthy volunteers.
The full table on the hub →This tab as a report to print or save as PDF → With an account.
10 studies; the count open now beside each. This study's row is marked.
First in 2002; this study’s year is marked. 2 started in 2024.
By drug class, each counting the studies that test any of its medicines:
This study's planned enrollment of 250 is above the median of 207 across 41 observational studies indexed under Telangiectasia, Hereditary Hemorrhagic.
Median enrollment 56 across the 4 interventional studies, 187 across the 6 observational. Of the 3 that completed or were terminated, 0 (0%) have results posted.
This tab as a report to print or save as PDF → With an account.
2 of 10 have an industry lead sponsor. The 4 most frequent:
University Hospital, Essen is the lead sponsor of 118 studies on the registry; 35 are open to participants now.
University Hospital, Essen has 8 studies filed under Telangiectasia, Hereditary Hemorrhagic — fewer than ten, so there is no comparison to draw.
None of the studies under way reaches primary completion within a year.
Among the 10 studies in Telangiectasia, Hereditary Hemorrhagic with a site in Germany, from their registry updates:
Nothing recorded among them since 2026-09-25.
This tab as a report to print or save as PDF → With an account.
Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler's disease, is a genetic disorder that leads to abnormal blood vessel formations. It primarily affects blood vessels in the skin, mucous membranes, and internal organs. The disease can be clinically diagnosed using the Curaçao criteria (1. Positive family history of HHT, 2. Recurrent and spontaneous epistaxis, 3. Multiple typical telangiectasias, 4. Organ involvement with vascular malformations, especially in the liver, lungs, gastrointestinal tract, or brain); if a patient meets at least 3 criteria, the diagnosis of HHT can be established.
Patients with HHT often have telangiectasias on their faces. Additionally, many patients suffer from anemia, which can result in a pale and potentially tired appearance. Patients with HHT may be less satisfied with their appearance due to the aesthetic changes in their faces and may also experience psychosocial impairment. To further investigate this, various validated questionnaires (FACE-Q©, PROMIS-Profile-29+2, EQ5D), as well as routinely collected clinical data (e.g., laboratory values including hemoglobin levels, Curaçao criteria, smoking status, alcohol consumption, and the Epistaxis Severity Score (ESS)) will be used.
Patients suffering from HHT
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.
Exclusion criteria:
-Individuals not meeting the inclusion criteria.
No Intervention
Quality of Life and Patient Satisfaction measured using the FACE-Questionnaire
Using patient reported outcome measurements: Face-Questionnaire and Patient-Reported Outcomes Measurement Information System (PROMIS) in order to assess the quality of life in patients with HHT
Time frame: one year
Plan to share: Yes — The datasets used and/or analysed during the current study are available on reasonable request
No publications or documents are linked to this record.
Started Jan 2024 (actual). Primary completion is estimated for Dec 2025, 23 months after the start.
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 planned 23 months is below that.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
No contact was published for this record. The registry link below has the sponsor’s details.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions 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.
Telangiectasia, Hereditary Hemorrhagic →