The results from the latest Rare Barometer Voices survey entitled Rare disease patients’ preferences on data sharing and protection, have now been published on the EURORDIS website via a summary infographic.
See the survey results here
This survey was completed by 2,013 respondents from 66 countries and provides some interesting findings on how rare disease patients feel about sharing their personal data.
It also includes recommendations that were derived from the survey results that target stakeholders involved in data sharing initiatives as well as a research and recommendations methodology section. Understanding the patients’ wishes and needs ensure their participation and engagement in rare disease research and data sharing initiatives.