What will happen in the study?

This study is looking to store new and previously-obtained samples. When you have certain procedures done for care of your vascular anomaly, we will store samples for this project. Some of these procedures may not apply to you because they are not needed for your care. There will be no extra needle sticks or painful procedures to collect these samples. These can include:

a. Blood – Previously stored left-over blood samples may be kept for this project. Up to 4 teaspoons (20ml), depending on your size, of extra blood may be collected in the future from a vein or from your central line (a tube placed in your vein), if you have one. Blood may be collected when you have an IV placed for a procedure, such as a surgery or a scan. No additional risk is added to this routine procedure by the collection of this additional sample.

b. Tissue – Tissue left-over from a biopsy or other surgery (from the past or in the future) will be stored for use by researchers. There is no additional risk to you in the storage of this left-over sample.

c. Body Fluid – Left-over (no extra taken) body fluid from surgical procedures (from the past or in the future) may be stored for use by researchers. These could include spinal fluid or fluid drained from other sites (including lung, pericardium, or malformations) for your care. There is no additional risk to you in the collection of this sample.

2. There are other samples that are not part of your care that we will collect for research purposes only. These include:

a. Buccal (cheek) Cells – A sampling of cells from the lining of the inside of your mouth will be collected. This may be done with a sampling brush, a mouthwash rinse, or a collection cup. When using the brush, you could experience mild discomfort. If we cannot collect this sample while you are at CCHMC, we may mail a kit to your home so that you can collect the sample and send it back to us without cost to you.

b. Urine – A urine sample will be collected following routine clinic guidelines. There is no additional risk or cost to you in the collection of this sample.

We will get some information about you and your health and store it in a database. This will include: a) personal identifying information such as date of birth, gender, etc., b) past medical V26NOV2019 and family history, and c) medical information (test and physical examination results). We will use your medical record from time to time to update this information.