questionnairePatient Information
EuRREB – European Registries for Rare Endocrine and Bone conditions supports patients, healthcare professionals, and researchers by collecting data on rare endocrine and bone diseases. Our mission is to improve research, care and treatment for those affected by these rare diseases. Through our two key registries, e-REC and Core, we offer a platform to collect essential data and foster collaborative research across Europe.
Want to join us by contributing to groundbreaking research and help to improve treatment for rare endocrine and bone conditions? Discover how you can be a part of this important work.
Want to make a difference?
As a patient you can make a difference by sharing your data with our Core Registry database. The more data we collect the better we understand rare endocrine and bone conditions, which helps us to improve the care of and treatment for these patients. As our slogan reveals: more data, better outcomes!
Before you decide if you want to participate, please carefully read our Patient Information Folder (PIF), soon available in different languages! You will find all relevant information in this folder. Also take a look at our Frequently Asked Questions (FAQ) section to help answer some questions you might have.
How to register as a patient?
After carefully reading the information folder you have decided to share your data. Great! But what is the next step? Contact your doctor and ask to share your data with our Core Registry database. Your doctor will provide you with a consent form that you need to fill in with your details and sign. After you have given consent your doctor will provide you with access codes by email. You can activate your account and start entering your data. Please find our Patient Guide to help you enter your data into our Core Registry.
If you want to share your data, but not actively enter data yourself in our database this is also an option. Only your doctor will then share the clinical data in our database.
Is your doctor not familiar with our registry? Please refer your doctor to this webpage and ask your doctor to register. Alternatively, you can contact us to see how we can help you to get registered. The information you provide will not be used for any purpose besides helping you to access the registry.
What do we want you to enter?
At the moment patients can contribute by filling in general information or a Condition Specific Module: a detailed questionnaire for your condition.
There are 3 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 max. 5 minutes.
- Pain assessment (only for Fibrous Dysplasia and Achondroplasia patients). Max. 5 minutes.
For some conditions you can also fill in a Condition Specific Module. In these questionnaires you can find the questions to answer specifically for your condition. The questions in these modules were designed by our patient representatives. In the future more Condition Specific Modules on patient related outcomes will be available.
How often do you need to enter information?
Every 12 months we ask you to enter data, preferably when you visit your doctor as we can compare your reports to those of your doctor. Of course extra data can be entered on demand. Every time you fill in a questionnaire your doctor will receive a notification. You can always log in to see your own data and download your data.
Need our help to enter your data?
We are here to assist you! We offer online support and can help you to enter your data or answer any questions. You can log in for a drop-in (online support) session, add the session to your calendar and log in with ZOOM.
More Information
Please check our FAQ section or read this article published in the Dutch Pituitary Foundation magazine written for patients explaining our rare disease registries.
If you have a question which is not in our FAQ section, please ask your doctor or contact us at registries@lumc.nl.