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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’