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Table 1 If given the opportunity, would you be willing to make your/the person you care for health information available for the purpose of

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 = 2013) Number of people % of responses
Better understanding mechanisms and causes of your disease
 Yesa 1954 97%
 Nob 40 2%
 Don’t know 19 1%
Developing new treatments for your disease
 Yesa 1953 97%
 Nob 41 2%
 Don’t know 19 1%
Improving diagnosis of your disease or suspected disease
 Yesa 1946 97%
 Nob 44 2%
 Don’t know 23 1%
Receiving additional specialist advice on your care
 Yesa 1915 95%
 Nob 76 4%
 Don’t know 22 1%
Improving research and care on diseases other than yours
 Yesa 1803 90%
 Nob 166 8%
 Don’t know 44 2%
Carrying out research not related to the medical field
 Yesa 1029 51%
 Nob 841 42%
 Don’t know 143 7%
  1. aIncludes those who responded either ‘yes, definitely’ or ‘yes, probably’
  2. bIncludes those who responded either ‘no, probably not’ or ‘no, definitely not’
  3. Because of rounding, percentage might not add up to exactly 100%