Table 1.

Characteristics of participants (N=119)

			N	%
Female			87	73.1
Caucasian			110	92.4
Educational attainment
	High School		9	7.6
	Some college		37	31.1
	Bachelor’s degree		41	34.5
	Post-graduate education		32	26.9
Has children			94	79.0
Age
	Mean	52.3 years
	Range	25 – 80 years
Diagnosed with HHT			109	91.6
Seen at HHT Center of Excellence
	Within last 5 years		60	50.4
	More than 5 years ago		23	19.3
	Never		36	30.3
Has had genetic testing
	Yes, full sequencing		37	31.1
	Yes, single site		9	7.6
	No		69	58.0
	Unsure		4	3.4
Type of provider ordering genetic testing (if tested)
	Primary care provider		3	6.5
	Provider at HHT Center of Excellence		31	67.4
	Genetic counselor/medical geneticist		12	26.1