Medical References

 

HHT Scientific and Medical Publications

Click Here to view references relating to HHT research and discoveries along with updates on medical treatments and procedures. This is a comprehensive list of articles that have been published in various scientific and medical journals from 2004 to present.

 

HHT Clinical Guidelines

The first International Guidelines for the Diagnosis and Management of HHT have been published in the  Journal of Medical Genetics.

This comprehensive document details international recommendations for the diagnosis of HHT and for related AVMs, by organ. It also details recommendations for management of the multi-system manifestations of the disorder. The HHT Guidelines were developed with experts from 13 countries, using AGREE methodology for pre-meeting evidence search, retrieval and abstraction, and GRADE methodology for the recommendation development process.

The guidelines development process also involved HHT patients. HHT is a not-so-rare (1/5000) autosomal dominant disease which unfortunately remains under-diagnosed and under-treated. The development and publication of these evidence-based consensus guidelines are the first step towards improving the standard of care for HHT patients.

 

Epistaxis (Nosebleed) Severity Scoring Tool (ESS)

This online tool will prompt you to complete several questions concerning your nosebleed experience. The purpose of these questions is to calculate the severity score of epistaxis for patients with HHT. Treatment for epistaxis should be determined by a care provider with experience in treating patients with HHT and this calculation should serve as an adjunct to clinical evaluation. Your severity score can help your doctors evaluate the most effective treatment for your nosebleeds.

Dr. Hoag conducted this research through an HHT Foundation grant award and presented an abstract outlining the results of his study at the 8th HHT International Scientific Conference