A lack of race and ethnicity data in the treatment of hereditary hemorrhagic telangiectasia: a systematic review of intravenous bevacizumab efficacy

BACKGROUND: For extreme hereditary hemorrhagic telangiectasia (HHT) disease, treatments such as intravenous bevacizumab are often utilized. However, whether its efficacy is similar across diverse races and ethnicities is unclear. METHODS: In this systematic review, we performed a search for English-language articles identified through PubMed, Embase, and Scopus databases whose research occurred in the United States (US). Search terms related to HHT, epistaxis, and intravenous bevacizumab. We searched specifically for the intervention of intravenous bevacizumab because the term serves as a suitable surrogate to convey a patient who has both a diagnosis of HHT and established care. We focused on number of patients recruited in intravenous bevacizumab trials who were identified by race or ethnicity. RESULTS: Our search identified 79 studies, of which four were conducted in the US. These four were selected for our systematic review. In these studies, 58 total patients were evaluated (ranging from 5 to 34 participants), whereby, information on age and gender were included. However, none of the US-based studies shared race or ethnicity data. CONCLUSION: Inability to find studies regarding intravenous bevacizumab use in patients with HHT in which race and ethnicity are reported limits our ability to understand the therapy’s efficacy in specific populations. Without emphasis on race and ethnicity in such trials, showing the potential of HHT-related diversity in individuals with this disease may reaffirm implicit bias around HHT diagnosis and treatment. Future work on HHT should emphasize sociodemographic data collection and reporting in an effort to understand this disease in diverse populations. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-022-02371-0.