EURORDIS - European Rare Diseases Organisation
The results are out! ?? ? Read the new Orphanet Journal of Rare Diseases (OJRD) publication that presents the latest EURORDIS - European Rare Diseases Organisation #RareBarometer survey results on rare disease patient's perspectives on data sharing and data protection in research and healthcare settings! Main findings➡ "Rare disease patients, regardless of the severity of their disease and their socio-demographic profile, are clearly supportive of data sharing to foster research and improve healthcare. However, rare disease patients’ willingness to share their data does come with specific requirements in order to respect their privacy, choices and needs for information regarding the use of their data." The article then gives 7 recommendations to inform and support stakeholders involved in data sharing that can be used when planning these initiatives. Read full article here: https://ojrd.biomedcentral.com/articles/10.1186/s13023-019-1123-4 #PatientInvolvement ... See more
