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Table 10 And how often would you like to be informed about the outcome of the project?

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

Several time a week

112

6%

Once a week

427

21%

Once a month

1101

55%

Once a year

241

12%

Don’t know

124

6%

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172