Thank you so much to everyone who participated!
to those We are glad to share with you that as a part of its activities, ERN BOND has launched two questionnaires, one addressed to healthcare professionals & patient groups and one dedicated to patients with the aims to take stock of the registries or databases being used in Europe and to identify the main challenges faced by stakeholders with data entry into a natural history database.
The HCP survey was disseminated in English only, while the patient questionnaire has been translated into the following languages: Czech, Dutch, English, Estonian, French, German, Italian, Portuguese and Swedish.
The survey dissemination has been closed on September 30th. The results of these critical surveys will be used to design a registry on rare bone diseases in the coming years.
For more information about the questionnaires or other information, you can contact the ERN BOND Coordinating Team at firstname.lastname@example.org.