CDC Conference: HHT in the 21st Century
March 5-6, 2008
The Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, in conjunction with the Center for Disease Control and Prevention (CDC), held a landmark conference on March 5 – 6, 2008 at the Tom Harkin Global Communications Center in Atlanta, Georgia.
The purpose of this conference was to define and prioritize objectives to improve clinical outcomes, enhance the quality of life for those affected by HHT, and reduce intrinsic and extrinsic costs related to HHT treatment.
Please click on the following links to learn more about the Conference:
- HHT/CDC Conference Introduction
- HHT/CDC Executive Summary
- HHT/CDC Conference Program
- HHT/CDC Goals and Objectives
Over 60 health care professionals including: emergency medicine physicians, school nurses, family practitioners/internal medicine, pediatric specialists, physician assistants, dentists and dental hygienists, dermatologists, gastroenterologists, otolaryngologists, hematologists, pulmonologists, neurologists, cardiologists, radiologists, geneticists as well as representatives from governmental and non-governmental organizations attended this national conference. You can view participants by clicking on Participant List.
HHT is a long neglected national health problem that affects 75,000 Americans. HHT is a multisystem vascular genetic disorder producing arterioveneous malformations in the brain and lung which may result in stroke or hemorrhage. Twenty percent of children and adults with HHT die prematurely or may become disabled due to lack of recognition by the medical community. These outcomes are largely preventable with proper intervention. Timely diagnosis and treatment of HHT could improve outcomes and quality of life for people living with HHT while eliminating $6.6 billion in avoidable health care costs.
The conference was the first step in addressing this national health issue by identifying outreach programs that will increase surveillance, increase early recognition of people affected with this genetic condition, and support life saving interventions
For more information, contact Marianne Clancy, Executive Director of the HHT Foundation International, at 800-448-6389 or email her at [email protected] .
Our achievements in these areas during 2003-2006 were possible largely thanks to the support and generosity of our members and from grants received from John Abele on behalf of The Argosy Foundation.
NIH Workshop - HHT Vascular Biology & Pathophysiology
June 8-9, 2006
HHT Foundation in conjunction with the National Institute of Health (NIH) sponsored an HHT Workshop for basic scientific research. The conference provided an opportunity for NIH to formulate an HHT research plan. The workshop included a mix of keynote talks, platform presentations, and open discussion on several themes, including:
- Transforming Growth Factor-Beta Pathway and HHT
- Endothelial Biology and HHT
- Vascular Biology and HHT
- Chemical Genomics and HHT
- Organ Pathophysiology in HHT
- Click on the link below to view the Overview of the Program:
Clinical Practice Guidelines for HHT
November 15-16, 2006
The Consensus Development Conference consists of a group of experts in the field of HHT brought together to work collaboratively with professional facilitators to improve diagnosis and treatment of HHT. The goals of the conference are to review existing evidence on specific medical issues in a systematic fashion, to obtain expert consensus where scientific evidence is lacking, and to synthesize recommendations for Practice Guidelines
- To revise the existing Clinical Practice Guidelines for the diagnosis of HHT (Curacao Criteria) by incorporating the utilization of molecular genetic testing.
- To develop Clinical Practice Guidelines for the diagnosis, screening, and treatment of the major areas of clinical concern in HHT, including chronic epistaxis (nosebleeds), pulmonary arteriovenous malformations (AVMs), hepatic vascular malformations, cerebral AVMs, gastrointestinal bleeding, and skin telangiectases.
- To develop materials for and approaches to dissemination of the Clinical Practice Guidelines for health professionals. Examples include peer-reviewed publications, a site on the HHT Foundation International web page, and a multimedia presentation that would be available to individuals or educational and training programs that wish to teach about HHT.
- To develop recommendations for research priorities that will continue to improve the quality of evidence upon which the Clinical Practice Guidelines are based
At the conclusion of the Consensus Conference, the following will be identified and established:
- Clinical and genetic criteria by which a definitive diagnosis of HHT can be made
- Criteria for diagnosis and treatment of the most common symptoms and organ manifestations of HHT, including chronic nosebleeds, GI bleeding, pulmonary and cerebral AVMs, and liver vascular malformations.
- Protocols for routine follow-up by primary care and specialty physicians.
- Protocols for treatment of acute episodes.
- Recommendations for publication and broad distribution of Consensus findings and HHT Standard Practice Guidelines, and presentation at scientific and professional symposia.
- Strategies developed for implementation of the Practice Guidelines as the standard of practice and for assessment of the impact of Practice Guidelines on physician behavior and HHT care in North America.