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Interested in Research Participation?

The below studies are seeking participants, read more to learn about participation and eligibility. 


Join the Patient Registry and recieve personalized notifications about studies. Learn more.


Cavernous Angioma Symptomatic Hemorrhage Exploratory Proof of Concept Trial 

Atorvastatin Treatment Exploratory Proof of Concept (AT CASH EPOC) Trial 

The first clinical drug trial for cavernous angioma symptomatic hemorrhage (CASH) has been approved by the National Institutes of Health (NIH) and will begin recruiting at the end of the summer. The University of Chicago Medicine will examine the effect of a widely-used and currently approved drug, atorvastatin, on stabilizing cavernous angiomas that have hemorrhaged.

Atorvastatin is a statin drug, commonly used for cholesterol lowering and stroke and heart attack prevention. While animal studies have been promising, it is currently not known if the drug is safe or helps prevent bleeding in cavernous angiomas in humans. The trial will enroll patients with cavernous angioma who suffered a demonstrated symptomatic hemorrhage in the prior year, where the bleeding lesion has not been resected or radiated. It requires research visits to the Chicago site for specialized imaging. Drug or placebo, and all research imaging and tests are covered by the trial, in addition to a limited travel stipend. Medical care may continue with local physicians. 

 

For more information, visit HEREClinicaltrials.gov  or view this in formative WEBINAR deliverd by Dr. Awad.

 

Trial Readiness in Cavernous Angiomas with Symptomatic Hemorrhage (CASH TR)

 

In preparation for large multi-center clinical trials, a study team including the University of Chicago, University of New Mexico, Mayo Clinic, Barrow Neurological Institute and University of Utah, aims to establish a research infrastructure for future trials. This Trial Readiness project will assess potential patient cohorts across study sites and hemorrhage rates in those patient groups. Furthermore, the team will validate the reproducibility and reliability of imaging biomarkers at multiple institutions. Study participants will be asked to provide baseline clinical information with a group will be followed annually for two to three years. For more information,view this in formative WEBINAR deliverd by Dr. Awad

 

If you receive care at the participating institutions, and you have suffered a symptomatic hemorrhage in the prior year, you will be screened and asked to enroll in this study.

 

Quality of life in patients with brainstem cavernous malformations

Developing a new scale to measure Quality of Life

Many scientific studies use a general scoring system called the modified Rankin score to determine outcome in patients with cavernous malformations.  This score is a 5-point scale generally measuring physical defects. However, it does not take into account the emotional and social effects, nor your opinion on how you are feeling about the physical disability.  To be able to give other patients better information to decide on management of their brainstem cavernous malformation, we want to hear from you.

This study is currently enrolling adults who have brainstem lesions (or, who have had a brainstem lesion surgically removed). Participation includes completing an online survey. For more information, visit HERE


Brain Vascular Malformation Consortium

Investigational Study of Clincial Variability in Familial CCM

The Brain Vascular Malformations Consortium (BVMC) is a study team investigating three rare diseases that cause brain vascular malformations including, Hereditary Hemorrhagic Telanglectasia (HHT), Sturge-Weber Syndrome (SWS), and Cerebral Cavernous Malformations (CCM).

We are currently recruiting participants for a study called, “Brain Vascular Malformation Consortium: Predictors of clinical course. Project 1: Modifiers of Disease Severity and Progression in Cerebral Cavernous Malformations (CCM).” The goal of this study is to investigate the genetic factors that contribute to CCM disease severity and progression. 

In this study, clinical, genetic and environmental information will be collected from individuals (and their faimly members) with the inherited CCM to look for risk factors affecting CCM disease severity. 

Any potential risk factors that are identified may have implications for all forms of CCM, including those with other genetic mutation or the sporadic form of the illness.

To learn more about this study, please visit HERE.

 

MicroBiome Study

Investigational Study of Gut Bacteria

Researchers at the University of Chicago, University of New Mexico, University of California San Francisco and Angioma Alliance are currently recruiting participants for analysis of their gut microbiome (via fecal sample). To learn more about the science behind this study, please see our NEWSLETTER.

To enroll, contact your local site or amy.akers@angioma.org. 

 

Propranalol Studies

Treatment Trial and Investigational Study

Two sites, the Barrow Neuorlogical Institute and University of Virginia are currently enrolling participants to investigate the effect of propranalol treatment on cavernous angioma patients. 

To learn more about treatment of surgically inaccessible CCM lesions, visit HERE

To learn more about the study invesitgating how propranolo treatment effects chemical signaling messages, visit HERE.

  

Angioma Alliance DNA/Tissue Bank

 

Donate surgical tissue for research

 

We are recruiting individuals who live in North America with a history of cavernous angiomas to participate in the DNA/Tissue Bank and Patient Registry. Your children with cavernous angiomas are encouraged to participate if you have had recent surgery or are schedule for surgery and are willing to request records and participate in the interviews.

 

For more information visit HERE

 

 

 

Updated 8/21/18