Investigating disparities and barriers in access to research and care for patients with Hereditary Hemorrhagic Telangiectasia (HHT)

Disparities in access to and quality of health care are recognized in multiple diseases and may be even more extreme in rare diseases, where there are already barriers to diagnosis and specialized care. In a rare vascular disease, such as hereditary hemorrhagic telangiectasia (HHT), access to early diagnosis and to preventative management are critical for prevention of stroke and other complications. Current International Guidelines recommend that once HHT patients are diagnosed that they be referred to specialized centers for care given the need for specialized care for vascular malformations affecting multiple organ systems. However, this may not be financially or logistically feasible for patients to travel to specialized centers, of which there are only 30 scattered across North America. Furthermore, there may be additional barriers for people with HHT getting care at specialized centers as well as participating in research studies that may be related to disparities and arise due to differences in race, ethnicity, gender and socioeconomic factors.

The purpose of this survey study is to identify barriers to referrals, care, and research for patients diagnosed with HHT. The project is being done in collaboration with researchers at the University of Toronto and the patient advocacy group, CureHHT.

For more information about HHT
To request a clinic appointment at the UCSF HHT Center of Excellence