Hereditary Hemorrhagic Telangiectasia and Neurovascular Manifestations, in the Danish HHT Database

Condition(s) studied

Investigational drug(s) / intervention(s)

Brain MRI: All included patients receive an MRI of the brain

Study summary

With a described prevalence of brain arteriovenous malformations (CAVM) of 12.8% in HHT patients, of whom 10% presents with intracranial hemorrhage, HHT pose a risk of devastating intracranial hemorrhage.

The main objective of the study is to challenge current statements (pros and cons) regarding systematic screening of asymptomatic HHT patients for neurovascular manifestations.

The investigators are thus seeking to answer a question many screening programs have faced.

A screening program should screen for a manageable problem, by a method that is considered cost effective and does not cause negative effect, even when extrapolated to a large cohort. Finally, the positive effect of screening program should outweigh the negative and not cause unnecessary concerns for the patients. The investigators are seeking to draw perspectives from the results to general questions about screening programs.

Eligibility

Primary outcome measure(s)

• Number of new patients with Cerebral Arteriovenous malformation — 1st of April 2022 - 30th of June 2025.
  MRI verified arteriovenous malformation

Trial sites (1)

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