ERN BOND WG1 - Survey |
Diagnostic Challenges
ERN BOND, the European Reference Network on Rare Bone Diseases
ERN BOND is one of the 24 European Reference Networks (ERNs) approved by the European Commission, which gathers expertise in Rare Bone Disorders. ERN BOND is formed by European health care professionals specialized in the provision of high-quality multidisciplinary patient care, scientific research and education and training in the field of rare bone diseases currently from 41 accredited expertise centres and affiliated centres from 17 European Member States.
ERN BOND’s main ambition is to implement measures that facilitate a multidisciplinary, holistic, continuous, patient-centred and participative provision of care for patients suffering from rare bone diseases among ERN BOND Member States and beyond. It also aspires at supporting patients affected by rare bone diseases and their families in coping with the impact of various aspects of the rare disease on their quality of life. It also aims at increasing the capacity of the patients with a rare bone disease in participating in decision-making regarding their care plan and their life project, in accordance with EUCERD recommendations (2013).
Objective of the Survey
The objective of this survey is to obtain comprehensive characterization of rare bone disease diagnosis across Europe by the assessment of:
ERN BOND is one of the 24 European Reference Networks (ERNs) approved by the European Commission, which gathers expertise in Rare Bone Disorders. ERN BOND is formed by European health care professionals specialized in the provision of high-quality multidisciplinary patient care, scientific research and education and training in the field of rare bone diseases currently from 41 accredited expertise centres and affiliated centres from 17 European Member States.
ERN BOND’s main ambition is to implement measures that facilitate a multidisciplinary, holistic, continuous, patient-centred and participative provision of care for patients suffering from rare bone diseases among ERN BOND Member States and beyond. It also aspires at supporting patients affected by rare bone diseases and their families in coping with the impact of various aspects of the rare disease on their quality of life. It also aims at increasing the capacity of the patients with a rare bone disease in participating in decision-making regarding their care plan and their life project, in accordance with EUCERD recommendations (2013).
Objective of the Survey
The objective of this survey is to obtain comprehensive characterization of rare bone disease diagnosis across Europe by the assessment of:
- the status of current practice in rare bone disorder diagnosis
- mapping gaps in the current provision of service
- the barriers to access genetic testing and confirmatory genetic diagnosis
- the knowledge in limitations of genetic testing and variant interpretation.
This Survey has been generated within WG1 Diagnostic Challenges of ERN BOND which is partially co-funded by the European Union. The development of this Survey started in 2019, therefore it has been decided to collect data also from Centre located in the United Kingdom.
We would be grateful if you could complete this questionnaire by15 November 2021.
Please answer the questions to the best of your knowledge. If you have any questions or need help with the survey, please contact us at info@ernbond.eu and we will guide you through any of the questions as needed.