Researchers cannot answer these questions without you.
HHT is rare enough that every person who takes part changes what is known. Some of these take fifteen minutes from your sofa. Others are ongoing studies at an HHT Center. All of them need people living with hereditary hemorrhagic telangiectasia (HHT).
Open now
Everything you can join today
Filter by what kind of study it is, or by whether you take part from home or at an HHT Center. Search by name, drug, or institution. Everything listed here is currently recruiting.
where participation takes place
Research sites on a map
Information on active clinical trials is presented as a service to the HHT community. However, anyone visiting these pages should be aware that the information contained has been submitted directly by those responsible for creating the trials. They bear sole responsibility for the accuracy of information relating to their trial(s). Clinical trials are designed to test the effectiveness and safety of drugs not yet approved for market.
Not all doctors will participate in any given clinical trial, and not all patients will qualify for these trials. Any decisions regarding clinical trials are serious ones and must be made after careful consultation with your healthcare provider.
Clinical trials
Finding HHT trials yourself
Every registered clinical trial in the United States is listed on clinicaltrials.gov, including HHT studies Cure HHT is not involved in.
One thing trips people up: you have to spell out “hereditary hemorrhagic telangiectasia” in the search box. The site does not recognize the abbreviation HHT, and searching for it returns nothing useful.
Bring anything you find to your HHT care team before acting on it. Eligibility criteria are specific, and a clinician who knows your history can tell you quickly whether a study is realistic for you.
Questions worth asking
Time
How many visits, how long, and how far will I travel?
Cost
What is covered, and what would I pay for?
Risk
What side effects have been seen so far?
After
Can I keep taking the treatment when the study ends?
Exit
What happens if I want to stop? You can always stop.
Studies open and close. Confirm status before enrolling, and note that the studies listed here are not all conducted or overseen by Cure HHT, though all are beneficial to HHT or rare disease research.
Studies that have finished
A closed study is a result, not a dead end
This page lists only what is recruiting now, so that nobody reads about a study they cannot join. When a study closes it moves to the milestone record, alongside everything else this community has achieved, with the year it finished and a link to its published findings where there are any.
That is where the NOSE Study, the Stanford bevacizumab trial, and the pomalidomide work now live.