Clinical Trials / Research Studies

Clinical Trials / Research Studies

Hereditary Hemorrhagic Telangiectasia Patient Treatment Outcomes: A Retrospective and Prospective Patient Registry

Why are we doing this research?

In this research study we want to learn more about the presentation, treatment and progression of Hereditary Hemorrhagic Telangiectasia (HHT) in patients that are seen at Cincinnati Children’s Hospital Medical Center (CCHMC).

Who can participate?

We are asking you and other patients with HHT that are seen at CCHMC to be in the research.

Conditions

  • Hematology - Hemangioma and Vascular Malformation

What will happen in the study?

In this research study, your medical records will be reviewed and data will be collected. There are no additional procedures or visits.

Data collected will include but not be limited to the following:

  • Age at the time of your HHT diagnosis
  • Genetic test results
  • Family history
  • Treatments
  • Lab values
  • Other information associated with your HHT

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

Being in this research study will not help you directly. When we finish the study, we hope to learn more about HHT. This may help other people in the future.

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

There is a small risk that your protected health information may be released to an unauthorized person. However, we will be very careful with this information and use unique study ID numbers to prevent this.

There may be other risks that we do not know about yet.

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

You will not be paid for your participation in this study.

Contact

Contact Us.Megan Metcalf and Nicholas Jakubowski
Email: HVMCresearch@cchmc.org
Phone Number: 513-803-4862