HHT Foundation International

YOU can help advance HHT Research

There are several HHT related research studies currently taking place. You or a family member may be interested in furthering the advancement of HHT research by participating in one of these clinical research studies. You can contact the primary researcher directly, call the HHT Foundation office at 800-448-6389.

Information on active clinical trials is presented as a service to the HHT community. However, anyone visiting these pages should be aware that the information contained has been submitted directly by those responsible for creating the trials. They bear sole responsibility for the accuracy of information relating to their trial(s). Clinical trials are designed to test the effectiveness and safety of drugs not yet approved for market.

Not all doctors will participate in any given clinical trial, and not all patients will qualify for these trials. Any decisions regarding clinical trials are serious ones and must be made after careful consultation with your healthcare provider.

PREGNANCY and HHT STUDY

Karen Wain, M.S.
Genetic Counselor
Department of Medical Genetics, Mayo Clinic HHT Center
(507) 284-4936
Email: wain.karen@mayo.edu

The purpose of this study is to learn more about the outcomes of pregnancies conceived by men and women that have HHT. We are trying to learn whether there are any pregnancy risks that are higher or different from risks in the general population.

Eligibility

Requirements

1. Complete a survey which includes questions about your own diagnosis of HHT, any birth defects you may have had, and about each pregnancy for which you were the parent.

You will not be paid for participating in this study and may stop participation at any time.

Survey
The survey should take 15-30 minutes and can be completed online at http://survey.venturecs.net/hhtreproductive.htm. If you prefer a paper copy, please contact Karen Wain, M.S.

BRAIN AVM STUDY

William Young, MD
University of California, San Francisco

Marie Faughnan, MD
University of Toronto

This will be the first large-scale study of brain AVM’s in HHT patients, who will be recruited through nine HHT Centers across North America and through the HHT Foundation. The goal of this study is to determine what genetic and clinical factors signal high risk for hemorrhage from brain AVM’s. This study should ultimately help doctors make decisions about brain AVM treatment for individual patients and will drive further research in brain AVM therapies.

Eligibility

• Have HHT and live in the United States or Canada
• Diagnosed with a Brain AVM, whether the Brain AVM has been treated or untreated

Add Your Name to the Participant List
Call or email the HHT Foundation to put your name on the “interested” participant list. Once the study protocol is complete, we will provide you with more information on how to move forward as a research study participant.

Contact
Nicole Schaefer
HHT Foundation International
(800) 448-6389
Email: nicole.schaefer@hht.org

HHT and INTERFERON STUDY

Karen Swanson, DO
Director, HHT Center
Mayo Clinic College of Medicine
(507) 266-0416

Jim Gossage, MD
Director, HHT Center
Medical College of Georgia
(706) 721-6791

This clinical research study is funded by the HHT Foundation International and the Food & Drug Administration (FDA) Office of Orphan Products Development. These two HHT Center’s are actively recruiting / enrolling HHT patients who are between the ages of 18-70 and:

• Are transfusion dependent; or
• Have liver involvement with HHT and heart failure; or
• Have diffuse lung involvement with low oxygen levels.

NOSEBLEED STUDY - Recruiting Patients in California

Dr. Terence Davidson
Director of the University of California
San Diego Nasal Dysfunction Clinic

Dr. Davidson and a member of the University of California, San Diego HHT Center, is conducting two clinical trials for the treatment of HHT epistaxis, using Avastin, a VEGF inhibitor.

In the first study, patients with an HHT Foundation Epistaxis Severity Score (ESS) between 2 and 5 who have a nose free of blood clots will be treated with an Avastin spray.

In the second study, those with higher ESS scores or whose nose is plugged with blood clots will be brought to the operating room where under general anesthesia, their nose will be cleaned and the mucosa lasered with a KTP laser followed by an injection with Avastin. Patients will be followed for 6 to 12 months.

For additional information, log on to Dr. Davidson’s website at http://drdavidson.ucsd.edu and review the medical information file on HHT. The Epistaxis Severity Score sheet is located on the same site under “Online Information”.

For an appointment, please call 619-543-6631 or log on to http://surgeons.ucsd.edu and request an appointment with Dr. Davidson.

VARIOUS CLINICAL TRIALS

You can check ongoing HHT clinical trials through the website www.clinicaltrials.gov. You must spell out Hereditary Hemorrhagic Telangiectasia in the search box. This website will not acknowledge the abbreviation HHT.