Brain Vascular Malformation Consortium (BVMC) Project 2

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• Brain Vascular Malformation Consortium (BVMC) Project 2: Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome

Brain Vascular Malformation Consortium (BVMC) Project 2: Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome

Why are we doing this research?

The purpose of this study is to learn more about Sturge-Weber Syndrome (SWS). By studying patients with SWS, we hope to understand how SWS vascular malformations lead to clinical symptoms, to identify which patients are at-risk for these symptoms, and to learn which treatment strategies could be preventative.

Who can participate?

Patients diagnosed with Sturge-Weber Syndrome brain involvement are eligible to participate in this study.

Conditions

• Hematology - Hemangioma and Vascular Malformation

What will happen in the study?

We will collect information from your medical record, including things like your diagnosis, age, gender, race, symptoms, treatments, and neurological or behavioral tests.

You will be asked to provide a sample of blood (up to 3 tablespoons), which will either be drawn from a vein in your arm or from a catheter tube. This blood sample will be taken up to three times during the course of the study: (1) at the time of study enrollment, (2) at the time of neurological symptoms, and (3) after neurological symptoms have calmed down. Each blood draw will take approximately 15 minutes.

What are the good things that can happen from this research?

There will be no direct benefit to you from allowing your data and specimens to be kept and used for future research. However, we hope we will learn something that will contribute to the advancement of science and understanding of Sturge-Weber syndrome.

What are the bad things that can happen from this research?

You may experience some discomfort when undergoing the blood draw. Drawing blood may cause temporary discomfort from the needle stick, bruising, infection, and fainting.

Additionally, participating in research studies involves a risk to loss of privacy, but the information collected about you will be handled as confidentially as possible.

Will you/your child be paid to be in this research study?

You/your child will not be paid to participate in this study.

Contact

Study Personnel Contact Information Email: [email protected] Phone Number: 513-803-4862

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