UPDATE!Our first report on the results from the survey for patients about their needs for an ERN patient research database has been finally published: https://pubmed.ncbi.nlm.nih.gov/34732217Thank you again for your time in participating,ERN BOND experts
Thank you so much to everyone who participated!
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.
FOR YOUR INFORMATION
Dear patient survey participant,
We would like to thank you for your commitment in participating in the compilation of the survey.
We have almost completed our first report on the results from the survey for patients about their needs for an ERN patient research database. As part of the survey, we asked for the name of the rare bone disease that you or your family member had. It has been noticed that a number of responses have come from people with a diagnosis of Ehlers-Danlos syndrome (EDS).
Unfortunately, this condition is not within the remit of the ERN BOND. Therefore, following a discussion among the working group experts, it has been decided not to include the answers of patients with EDS in further steps of survey results analysis. This because although EDS presents signs and symptoms involving the skeletal apparatus, the diseases is not included in the diseases of BOND direct competence.
Thank you again for your time in participating,
ERN BOND experts