Funding for this research was provided by:
Seventh Framework Programme
Received: 26 March 2019
Accepted: 11 June 2019
First Online: 12 July 2019
Ethics approval and consent to participate
: The Rare Barometer Voices database has approval from the French data protection authority (CNIL) and is compliant with the General Data Protection Regulation. Participants provided their email address during registration and gave explicit consent to participate on a regular basis in online surveys. Participants have the possibility to withdraw from the programme at any time. They are informed that data from the survey will be considered through collective analysis. Stored electronic survey records contain no identification of the participating respondents and responses are only analysed as aggregated data which are a consolidation of data relating to multiple patients that cannot be traced back to a specific patient. The survey was hosted and analysed using Sphinx IQ2. This survey software stores the data in France.
: Not applicable.
: The authors declare that they have no competing interests.