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Table 9 Would you like to be informed about the outcome of the project through each of the following means?

From: Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

(n = 2005)

Number of people

% of responses

Emails

 Yesa

1863

93%

 Nob

127

6%

 Don’t know

15

1%

Face to face discussion with professionals involved in the project

 Yesa

1718

86%

 Nob

235

12%

 Don’t know

52

3%

A dedicated website

 Yesa

1706

85%

 Nob

250

12%

 Don’t know

49

2%

Attending conferences

 Yesa

1349

67%

 Nob

558

28%

 Don’t know

98

5%

A mobile app

 Yesa

1119

56%

 Nob

819

41%

 Don’t know

67

3%

  1. Because of rounding, percentage might not add up to exactly 100%
  2. aIncludes those who responded either ‘yes, definitely’ or ‘yes, probably’
  3. bIncludes those who responded either ‘no, probably not’ or ‘no, definitely not’