International HHT Guidelines
Published September 8, 2020 in the Annals of Internal Medicine.
Here to Disseminate!
New HHT International Guidelines Released
Announcing the Second International HHT Guidelines for the Diagnosis and Management of HHT, published in the Annals of Internal Medicine. The Guidelines were developed by an international panel of HHT experts and patients, providing new evidence-based consensus recommendations in six priority topic areas: Epistaxis, Gastrointestinal Bleeding, Anemia & Iron Deficiency, Liver VMs, Pediatric Care, Pregnancy & Delivery. The 2020 Guidelines add to the First International HHT Guidelines published in 2009, most notably in areas that were not re-assessed in 2020: HHT Diagnosis, Brain VMs and Pulmonary AVMs. The HHT Guidelines recommendations should facilitate the implementation of key components of HHT (Hereditary Hemorrhagic Telangiectasia) care into clinical practice.
Explore Guidelines by Topic
Browse to see the recommendations and background for each topic.
Epistaxis (Nosebleeds)
Epistaxis is the most common symptom of HHT. It can have a devastating effect on quality of life and lead to iron deficiency and anemia. These nine recommendations are focused on reducing epistaxis.
GI Bleeding Management
GI bleeding develops in approximately 30% of HHT patients. These six recommendations cover testing and managing GI bleeding.
Anemia & Anticoagulation
Anemia is a common complication in people with HHT. These six guidelines cover testing and treatment of iron deficiency and anemia, as well as the use of anticoagulation therapy.
Liver VM’s
Liver VMs occur in approximately 75% of HHT patients, and are more common in women. These seven recommendations cover screening, diagnosis and management.
Pediatric Care
Potentially serious and life-threatening complications from HHT–pulmonary AVMs and brain VMs — can occur at any age. As such, these guidelines focus on their screening and management in children.
Pregnancy & Delivery
Pregnant women with HHT should be assessed for their risk of pregnancy and delivery-related complications and should have access to, as needed, a multidisciplinary team that includes HHT experts.
Diagnosis of HHT
Timely diagnosis of HHT allows for the appropriate screening and preventative treatment for the individual with HHT and their family members.
Pulmonary AVM’s
At least 40% of people with HHT have pulmonary AVMs. They are often unaware until they develop a life-threatening complication. Screening and treatment can prevent life-threatening complications.
Brain VM’s
At least 10% of people with HHT have VMs in the brain blood vessels. They are often unaware of these brain VMs until they develop a life-threatening complication.
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Introduction & Methods
Background on HHT and the process for developing the Second International Guidelines, including patient involvement.
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Funding Sources & Competing Interests
See the funding sources for the Second International Guidelines process, their role, competing interests and contributors.
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Authors & Author Affiliations
See the full list of authors for the Second International Guidelines and their affiliations.
👓 Resources
Get resources to help you understand and implement the guidelines including:
- Algorithms for the Diagnosis, Evaluation, and Management of HHT. These algorithms are designed to guide the screening and management of HHT.
- HHT Care Checklists for each topic. They support those with HHT to self-manage their care.
- The full list of references from the Second International Guideline process.
- Professional and patient groups that have endorsed the guidelines.
- The full table of recommendations (Second International Guideline process).
- Supplemental tables from the (Second International Guideline process).
📘 Publications
Download PDF’s from the Second (2020) International HHT Guidelines
You can also find and download a PDF of the 2009 International HHT Guidelines from this section.