Calling BBS members to help with an important study on OI diagnosis

ERN-BOND Questionnaire for patients on Diagnosis of Osteogenesis Imperfecta

About the study

This questionnaire will focus on Osteogenesis Imperfecta (OI), one of the disease areas covered by ERN-BOND.

The aim of the questionnaire is to provide a picture on the current situation in the 10 member states including United Kingdom represented to diagnosis and to identify the main challenges and potential solutions that could help reduce diagnosis delays. This aims to collect patients’ information on their experience leading to the disease diagnosis.

The results of the survey will feed into a white paper that will shed light on the unmet needs of patients in this specific area and serve as a basis for a dialogue with policy-makers on the challenges related to diagnosis of rare bone diseases.

Further information on the study is included in the Information Sheet below.


The survey closes 8th January 2018. The deadlines date have been extended so do please consider taking part.

How to take part

Prior to taking part in the study, you are required to fill in a consent form below.

Download the Information Sheet and Consent Form here

Please email your completed consent form to matiasignacio.delacalle@ior.it

Once this has been received, you will be sent the questionnaire to fill in.