International HHT Guidelines

HHT International Guidelines for Patient Care

Innovation

The first HHT International Guidelines were updated (HHT diagnosis, brain, lung) and new topic areas were addressed (epistaxis (nosebleeds), pediatrics, anemia, pregnancy, liver vascular malformations, and gastrointestinal bleeding).

Expertise

HHT physicians specializing in HHT and patients from around the world collaborated to create the most up-to-date guidelines for HHT diagnosis, screening, and treatment.

Excellence

The 2020 HHT International Guidelines set a standard of care for the diagnosis and care of HHT patients worldwide. The guidelines will ensure the criteria for screening and treatment of HHT are covered expenses by third party payers.

WHY ARE GUIDELINES IMPORTANT?

The HHT International Guidelines are used in HHT Centers of Excellence (CoE) worldwide for clinical decisions related to HHT diagnosis, screening, treatment and overall patient care management. In contrast to previous approaches in medicine, which were often based on tradition or authority, modern medical guidelines are based on an examination of current evidence within the paradigm of evidence-based medicine. These guidelines are used to set the standard of care to be used internationally for the diagnosis and treatment of HHT.

WHAT CHANGES CAN I EXPECT TO SEE IN THE UPDATED GUIDELINES?

These new HHT International Guidelines feature the most up-to-date information and standards of care, and include significant changes to the first guidelines (published in 2009). Additionally, new topics were addressed in the areas of Anemia, Epistaxis (Nosebleeds), Gastrointestinal (GI) bleeding, Pediatrics (HHT in Children), and Pregnancy.

A healthcare provider is obliged to know the medical guidelines of his or her profession and has to decide whether to follow a guideline’s recommendations for treatment. These guidelines can be used by other medical professionals throughout the world, not affiliated with a CoE, who are seeing HHT patients. The HHT International Guidelines dictate insurance reimbursement coverage for HHT patient screenings, treatments and surgeries. Click here to view the International HHT Guidelines clinical site to share with your physician(s).

Guideline Topic Areas

"Being in a room with physicians from 15 countries, who are committed to improving care for HHT patients and included us patients on the team to ensure our concerns were addressed, has been an outstanding experience. I am truly grateful."
- Carol D., HHT patient, Canada

"The HHT Guidelines will provide Education and guidance for referring doctors and patients."

Dr. Paul Rochon, HHT Center Director, University of Colorado Hospital

“Everyone respected differences in cultural health care systems but listened to one another and compromised to develop guidelines that will benefit HHT patients and their physicians world-wide.”
- Nicole Schaefer, Cure HHT

"The HHT guidelines will provide a basic guide for everyone treating HHT around the world."

Dr. Masaki Komiyama, HHT Center Director, Japan

Christopher McMahon Memorial
International HHT Guidelines Conference

Photos: Evan Gravely

The Christopher McMahon Memorial International HHT Guidelines Conference was held in November 2019 (guidelines published in 2020), where physicians specializing in HHT and patients from around the world converged to create the most up-to-date guidelines for HHT screening, diagnosis and treatment to provide standardized patient care.

This all-important conference, with the ability to impact each and every patient undiagnosed or diagnosed with HHT, consisted of the most brilliant minds in the HHT arena. When our panel of experts were asked to participate at this level, there was, hands-down, an overwhelming enthusiastic “YES” as each and every one of our attendees understood the importance of this collaborative effort and its far-reaching influence on the future of how patients with HHT are screened, diagnosed and treated.

Attendees, including international HHT patients who provided a powerful voice for those who live and breathe this disease to the table, took to the challenge of creating uniform and cohesive protocols for the entire medical community—a daunting task that has not been undertaken since the last guidelines conference held in 2006 (guidelines published in 2009).

Acknowledgments

The dedication of the conference co-chairs, along with the generous support of the Christopher McMahon family, brought together over sixty-five HHT physicians and patients to the “Queen City” to create the most up-to-date guidelines for HHT screening, diagnosis and treatment. The critical material gathered from this in-depth study of current treatments, protocols and best practices will have the ability to impact every person undiagnosed or diagnosed with HHT. This means you—our important patients!

It is with an abundance of gratitude that we thank everyone who contributed to the 2019 Christopher McMahon Memorial International HHT Guidelines, but this landmark event would not have been possible without Dr. Faughnan, Dr. Hetts, Dr. Mager (Conference Co-Chairs) and the McMahon Family.

Second International Guidelines for the Diagnosis and Management of HHT