An observational study in Hereditary Haemorrhagic Telangiectasia, sponsored by University Hospital, Essen. Active, not recruiting at 1 site in Germany. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2024-12-10.
Sponsored by University Hospital, Essen · Observational
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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 the only one that started in 2019, is one of 6 observational ones, and was the 5th 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
University Hospital, Essen · Sites in Germany
Ages 18+
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.
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10 studies; the count open now beside each. This study's row is marked.
First in 2002; this study’s year is marked. 1 started in 2019.
By drug class, each counting the studies that test any of its medicines:
This study's planned enrollment of 60 is below 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.
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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.
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Inserting nasal self-packings is a secure method leaving patients more self-confident. We provide a video on https://www.youtube.com/watch?v=LaioLYfSJ-E demonstrating how to use nasal self-packings.
Inserting nasal self-packings is a secure method leaving patients more self-confident. In HHT centers, patients often learn how to use them, but these centers are rare. Providing a video on https://www.youtube.com/watch?v=LaioLYfSJ-E demonstrating how to use nasal self-packings may also help patients without access to HHT centers.
Patients with hereditary hemorrhagic telangiectasia who often suffer from recurrent nosebleeds
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:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
video-assisted nasal self-packing
Evaluation of video-assisted teaching
Evaluation of video-assisted teaching using a questionnaire. Data about using new media (Do you use a smartphone/ tablet (yes/no)? Do you use the internet (e.g. youtube, facebook, instagram...)?) Moreover, patients feeling loosing control (before and after using pneumatic nasal self-packing: how often do have the feeling of losing control (scale form 1 to 5, 1 = very often, 5 = never) and safety (after learning the nasal self-packing with pneumatic tamponades do you feel safe? (scale 1 to 5, 1 = not very safe, 5 = safe) is analyzed. Additional data about number of blood transfusions, hospitalty and doctoral consulation rates (regarding recurrent nosebleeds in the last 12 months: How many bloodtranfusions did you get (because of nosebleeds/ gastrointestinal bleedings/ both)? How often did you see a doctor or needed to be treated in hospital?) is documented.
Time frame: 1 year
Analyzing duration of consultation
the duration of the consultation and seeing the video is documented and compared to the Duration of consultations in patients with HHT before having uploaded the video
Time frame: 1 year
Plan to share: Undecided
Ran from Jan 2019 to primary completion in Jul 2024, 65 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 65 months is above that.
How these figures are worked out, and which studies are left out of them.
This study is active, not recruiting, as verified in Dec 2024. You cannot join it, but the record below documents what was studied.
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Telangiectasia, Hereditary Hemorrhagic →