Arteriovenous malformations (AVMs) are defects of the circulatory system generally believed to arise during embryonic or fetal development or soon after birth. AVMs are a series of intertwined arteries and veins that have the potential to bleed, causing stroke and disability, even possibly death. While most people with AVM lead relatively unaffected lives, about 12 percent of those affected - about 36,000 Americans - can be seriously affected.

THE TGEN/BNI APPROACH

In collaboration with the Barrow Neurological Institute, TGen faculty believe one increasingly important approach to understanding complex disorders such as AVM is to determine whether fundamental defects in the genome (the entirety of an individual's hereditary information contained in the DNA) occur commonly in AVM patients. There is tremendous value in this information to scientists who are searching for the underlying genetic actions that allow for the inception and advancement of AVM.

To aid their studies, TGen and the Barrow have created an international registry of AVM patients to draw upon for study. By sequencing the genomes of AVM families, TGen scientists hope to identify the genetic changes that may cause or be associated with these arterial defects.

Additionally, there is potential value to physicians in using the same genomic information to identify definitive markers of risk, as well as through recognition of "targets" for therapy not currently considered in treating AVM patients.

THE TGEN/BNI AVM RESEARCH REGISTRY

While we are not currently enrolling participants in a study at this time, adding your name to our registry database allows us to contact you if/when you become eligible for a research study.

By completing the AVM Research Registry page you give the Translational Genomics Research Institute (TGen), permission to contact you with more information related to research, and research participation.

It is important to know that you are not enrolling in a research study at this time; you are enrolling into a registry database. If/when you become eligible for a study, we will ask you to sign a consent form that outlines in detail the nature of the research study, including any potential risks and benefits. 

YOUR PRIVACY MATTERS

Because we value your participation and want to respect your privacy, access to the database is limited to clinical coordinators and registry administrators, who will provide you with specific research information if/when you qualify, and contact you when new research opportunities become available. 

By clicking continue, you acknowledge that you have read and understood the above statement. 

If you are a spouse or legal guardian filling this form out on behalf of a patient, all the information we are seeking on this form is related to the patient/participant.

CONFIDENTIALITY

Your contact information will go directly to a Clinical Research Coordinator. TGen strictly adheres to established confidentiality procedures that are intended to protect the identity of research participants. The Registry will not disclose personal information to parties outside the registry process. All data samples will be coded with a unique identifier while at TGen. All contact information is protected at all times. 

If you would like to contact the Clinical Research Coordinator, please email avmregistry@tgen.org.