TABLE 2—

Research Contact With Patients Among Respondents Who Allowed Contact (n = 33)

	No. (%)a
Is physician involved in recruitment process?
Yes, required	25 (75.8)
Yes, strongly recommended	4 (12.1)
No	4 (12.1)
If yes (n = 29), physician contacted by
Investigator	17 (58.6)
Registry staff	11 (37.9)
If yes (n = 29), type of physician involvement
Notification	24 (82.8)
Permission	4 (13.8)
Patient contacted by
Investigator	20 (60.6)
Registry staff	12 (36.4)
Patient response
Opt out	21 (63.6)
Opt in	11 (33.3)

^aPercentages may not sum to 100% because of missing information.