Research Study Summary
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
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
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?
To Learn more