The development of medications to treat cavernous angiomas is the objective we have all been dreaming of - a non-invasive way of preventing hemorrhage and the development of new lesions. While it may be tempting to run to your doctor and get a prescription for any of the medications that will be tried, there are at least three reasons why this may not be a good idea:
1) The medications under consideration have been tested only in mice and fish that have been genetically engineered to have the hereditary form of cavernous angioma. They have not been tested in humans with cavernous angiomas. This means that they may not work or may indeed have a negative effect. To be as safe as possible, anyone taking a trial medication should be under the supervision of the researcher who is running the trial.
2) If you take a medication before it is shown to be effective in humans for the treatment of cavernous angiomas, you will become ineligible for participation in drug studies at least until you have been off the medication for a period of time. To prove that a medication works, we will need initially a small number of people to participate in pilot studies and then many people to participate in broader clinical trials. We need to help research move these possible treatments forward quickly and not muck up the studies with unsupervised use.
3) A study may actually be trying to compare the effectiveness of a particular medication on a variety of disorders and cavernous angiomas may be an experimental control. It may turn out that a medication works well for treating other vascular malformations but does not work for cavernous angiomas. Just because a medication is under study does not mean it is a good candidate for treating our specific lesions.
For the most current information about studies that need participatns, please visit and consider joining the Cavernous Angioma Patient Registry: www.angioma.org/registry