Sharing data is undoubtedly one of the fundamental pillars to advance in scientific research and clinical outcomes of patients affected by Rare diseases. Hearing patients’ voices and understanding their needs and expectations is essential to engage them actively and promote their participation in rare disease research.
In this context, EURORDIS-Rare Disease Europe conducted a survey ia Rare Barometer Voices with the aim of to explore patient and family perspectives on data sharing and data protection in research and healthcare settings and develop relevant recommendations to support shaping of future data sharing initiatives in rare disease research. Results were published in an article in the Orphanet Journal of Rare Diseases by EURORDIS and the School of Social Sciences of Cardiff University.
A graphic report has been also produced showing the results of the first International survey together with recommendations derived from the survey. This summary infographic shows the collective results of all the 2,013 respondents from 66 countries and is available in 23 languages! Visit EURORDIS website for all the information!