Trial Information

Rare Benign Vascular Tumor Registry

What is the purpose of this study?
The purpose of this research study is to collect information on the natural course of benign vascular tumors and their response to treatment. Little is known about these tumors and what is the best treatment plan for them.

The information may also be used to study the outcomes of various treatments, to determine which ones are the most helpful, and for future benign vascular tumor research.

Because it is important to understand the outcome of rare benign vascular tumors and their treatments for the patient over a period of time, the data included in the study will be information from before, during, and after treatment. It is also important for researchers to be able to understand what happens to patients as they become adolescents and adults.

Finally another important purpose of the study is to maintain contact information (phone number and address) so that researchers can contact participants for possible participation in future research studies.

The Rare Benign Vascular Tumor Registry will contain data and medical records from people all over the world, which will be kept at Cincinnati Children’s Hospital Medical Center.

Who will be included in this study?
Patients with a rare benign vascular tumor may be eligible to participate in this clinical trial.

What is involved?
Participants will not need to have any additional tests or examinations to participate in this study.

The physician who provides care for the subject to be enrolled in the Registry will complete forms using clinical information that has already been collected for clinical care. The form will be completed at the time of diagnosis. A follow up form will be completed at six months and then annually by the physician.

For participants that are enrolled after treatment has taken place, their physician will only need to complete one form at the time of enrollment and then follow up forms annually.

Additional information about how the data we collect will be used will be discussed with you before you need to decide if you will participate in this research study.

What are the benefits?
Participants who agree to take part in this research study will not experience a direct medical benefit. The information learned from this research study may benefit other patients with Rare Vascular Tumors in the future.

Will I get all the facts about the study?
Parents interested in having their child participate, as well as adult patients/subjects, will be scheduled with a physician who will thoroughly explain all of the details of the study. The physician will review the consent form with the parent/guardian/adult subject and will be sure that all questions are answered. The consent form goes over all of the procedures, the risks, the benefits, the compensation, who to contact with questions or concerns and more. Study procedures will not begin until a parent/guardian or adult subject has signed this form and, if of age, the child has given at minimum his/her verbal agreement.

What are the risks?
Participants may be inconvenienced by the questions that the physician will ask in order to complete the data forms. Data sent to the Registry is kept confidential. However, the information is not de-identified; therefore, there is a small risk that this data may be obtained by unauthorized individuals.

Who should I contact for more information?

Mary Sue Wentzel, RN
Cincinnati Children's Hospital Medical Center/Cincinnati Children's Research Foundation
Division of Hematology/Oncology, MLC 11013
3333 Burnet Ave.
Cincinnati, OH 45229-3039
Phone: 513-636-0944
Email: Marysue.wentzel@cchmc.org

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Research Center Information: Cincinnati Children's Hospital Medical Center/Cincinnati Children's Research Foundation

If you would like to learn more about participating in this study, please send an email message using the form below.

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