An observational study in Hereditary Hemorrhagic Telangiectasia (HHT) and Obstructive Sleep Apnea (OSA), sponsored by University Hospital, Essen. Not yet recruiting. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-10-21.
Sponsored by University Hospital, Essen · Observational
Hereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant vascular disorder (prevalence approx. 1:5,000-1:8,000) characterized by recurrent epistaxis, mucocutaneous telangiectasias and visceral vascular malformations. Chronic bleeding frequently leads to anemia and iron deficiency, which is associated with restless legs syndrome. Our earlier work suggested that up to 22% of affected patients may suffer from it. Nocturnal epistaxis, nasal clots, and nasal obstruction may further disturb sleep, and positive airway pressure (PAP) therapy may dry out the nasal mucosa, aggravate bleeding, and cause mask intolerance. The association between obstructive sleep apnea (OSA) and HHT has not yet been adequately studied.
This retrospective, exploratory, hypothesis-generating analysis aims to determine the frequency of OSA diagnoses documented in the clinical records of our existing HHT cohort. The primary endpoint is this documented frequency, explicitly interpreted as a minimum frequency rather than a true prevalence, since not all patients were systematically screened. Secondary endpoints include details of OSA diagnostics and treatment course, complications of OSA therapy in HHT patients, OSA-related comorbidities (e.g., arterial hypertension, obesity), medication and potential adverse effects (especially respiratory depression), hypoxia-related laboratory parameters (iron status, anemia), and general patient and disease characteristics (sex, weight, height, Curaçao criteria). The findings are intended to inform a possible subsequent prospective screening phase.
102 studies on the registry are indexed under Telangiectasia, Hereditary Hemorrhagic; 24 are open to participants now.
This study's planned enrollment of 1,000 is above the median of 207 across 39 observational studies indexed under Telangiectasia, Hereditary Hemorrhagic.
Browse Telangiectasia, Hereditary Hemorrhagic studies →University Hospital, Essen is the lead sponsor of 116 studies on the registry; 33 are open to participants now.
Counted across the registry records on this site, refreshed daily.
the entirety of patients presenting at our center with confirmed HHT diagnosis between 2014 and 2026 above 18 years
Inclusion Criteria:
confirmed HHT for group HHT without OSA, confirmed HHT and documented OSA for group HHT with OSA
exclusion criteria: age below 18 years only suspected HHT
HHT patients without OSA
HHT patients with OSA
obstructive sleep apnea
Time frame: up to 12 years from first included patients, end of 2026 the latest
No study locations are listed for this record.
Plan to share: No
No publications or documents are linked to this record.
Start is estimated for Oct 2026; primary completion for Dec 2026, 2 months later.
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
This study is not yet recruiting, as verified in Oct 2026. You cannot join it, but the record below documents what was studied.
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Telangiectasia, Hereditary Hemorrhagic →