When you have given consent to your doctor for the sharing of your data and your email adress you will receive an email. You can find instruction leaflets on how to access everything in different languages here.
The Condition Specific Modules will collect a more information. In the first development phase of EuRR-Bone, 4 conditions were selected to develop these specific modules:
- Fibrous Dysplasia and McCune Albright syndrome
- Rare causes of Hypophosphatemia
- Osteogenesis Imperfecta
- Parathyroid Carcinoma
What do we want you to enter?
We would like to ask you to complete 2 general questionnaires:
- Quality of Life (the EQ5D, a general questionnaire with 5 questions on your well-being)
- Mobility questionnaire with ±10 questions. This will take you 5 minutes (max)
For Fibrous Dysplasia and Achondroplasia we would like to ask you to complete a third questionnaire on pain assessment.
Then you can go to the patient conditions specific module module. There you can find the questions to answer.
How often do you need to enter information?
We would like you to enter data every 12 months, preferably when you visit your doctor as we can compare your reports to those of the doctor. Of course extra data can be entered on demand. If you enter a questionnaire like eg a quality of life questionnaire like the EQ5D your doctor will receive a notification. You can also download your on data to keep.
The questions in this module were designed specifically by the patient representatives of the group. In the future another questionnaire on patient related outcomes will be added when available.
If you have questions or interest in joining a working group, please contact us on EuRR_Bone@lumc.nl