Patient Information
EuRREB – the European Registries for Rare Endocrine and Bone conditions supports patients, healthcare professionals, and researchers in the fight against rare endocrine and bone diseases. Our mission is to improve research and treatment for those affected by these rare diseases. Through our two key registries, e-REC and Core, we offer a platform for gathering essential data and fostering collaborative research across Europe.
Want to join us in our fight by contributing to groundbreaking research and help to improve treatments 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 below. You will find all relevant information in this folder. Also take a look at our Frequently Asked Questions (FAQ) section on this page 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 must then activate your account yourself and you can 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, the detailed module 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 modules 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 also 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 through our homepage (green button: Join our next platform Drop-In session). Add the session to your calendar and log in with ZOOM.
More Information
Please check our FAQ section below 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 Q&A section, please ask your doctor or contact us at registries@lumc.nl.
Frequently Asked Questions (FAQ)
Doctors share their knowledge, data and resources in virtual networks . Patient registries can gather data in a secure place and a uniform manner, which makes it possible to compare the information. With the data in our patient registries we can do research and are able to improve the health care for our patients with:
- shorter diagnosis time;
- homogenous treatment for patients (or expert care accessible to) in all European countries;
- better treatments and development of new treatments;
- improve quality of life of people affected by rare endocrine and bone conditions.
To evaluate if a medical, surgical, or behavioural intervention is effective you have to perform research studies, so called clinical trials. Some endocrine and bone/mineral conditions are so rare that only a few patients in the world will have the right profile for a clinical trial. It is very important that patients suitable for that trial can be found and contacted quickly.
The best way of ensuring this can happen is to make sure that patients’ details are all collected together in a single database, or ‘registry’, that contains all the information that researchers will need, including each patient’s particular condition and other key information about their condition.
The registries are intended as a public service for the benefit of patients living with rare endocrine and rare bone/mineral conditions. You will be informed of any new information relating to your condition which might be of interest to you – for example if better ways of caring for patients with your condition have been identified.
Benefits for you as patient:
- shorter diagnosis time;
- homogenous treatment for patients (or expert care accessible to) in all European countries;
- better treatments and development of new treatments;
- improve quality of life of people affected by rare endocrine and bone conditions.
The data collected can also provide benefits to other patients with your condition, for example by revealing statistics on how many people across the world have the same condition, or providing information for researchers interested in the best standards of care for your condition. Overall improving quality of life for people affected by rare endocrine and bone conditions.
All patients with a confirmed diagnosis (or pending diagnosis) of a rare endocrine or bone/mineral condition. It is possible to give your permission to your doctor to share your data in the database, without you actively participating in the database. If you would like to actively participate in the Core Registry, you can tell your doctor, who can invite you. Both patients and their caregivers or family members can participate in the registry to provide researchers with valuable data regarding a specific condition.
Your data will be stored securely and no unauthorized people will be able to gain access to any personal information about you. It is possible that your data will be used for research, but then your data will be as much anonymized as possible (e.g., your data of birth will be recoded in ‘child’ or ‘adult’).
When researchers would like to use data from the registries for research, they will have to put in an official request.
Your data will be kept for an indefinite period with an evaluation every 5 years under the responsibility of the coordinator of our registries. The Leiden University Medical Center (LUMC) is the current owner of the e-REC and the Core Registry platforms. The Core Registry and e-REC have been approved in the Netherlands by Science Committee of Internal Medicine at the Leiden University Medical Center as ‘research databases’. For further information please visit our page on ethics.
The data governance standards in the e-REC and the Core Registry comply with General Data Protection Regulation (GDPR). All information kept in our registries will be treated confidentially. If any research or other documents based on data from the registries is published, this research will never identify you by name.
Third parties wishing to have access to data (such as researchers or companies planning clinical trials or conducting research on new therapies) will only be given anonymous information. Before they are granted access to this anonymous information, they have to receive approval from our Data Access Committee. Your data will not be made available to employers, governmental organizations, insurance companies or educational institutions, nor to your spouse, other members of your family or your doctor.
If there is a change in your contact information, you can e-mail the Registry Team at registries@lumc.nl. Data regarding your condition will be updated by your clinician.
No, our registries will never pass on any personally identifiable data to anyone outside the registries. If a company asks to find patients who might be suitable for their trial, you will be sent a letter, giving you details about the trial and the name of the person to contact if you are interested (usually the doctor who is running the trial at the centre nearest you). But only when you have previously given us consent to contact you. That is the only legal way that patients can be recruited for trials, and we think it is also the best way, because you have time to consider whether it is something you are interested in without being put under any pressure.
We hope you will be interested in registering even if you don’t want to take part in a trial. Your information will still be useful to researchers who are trying to find out more about people living with your condition, and you will be provided with other information that might be relevant to your condition.
Your participation in our registries is completely voluntary. Our national data protection laws grant you the right to access your own data and to rectify it or withdraw it completely at any time. Should you wish to withdraw your data from our registries you will be free to do so without having to provide any explanation.
If you would like any additional information about our registries, please do not hesitate to contact us at registries@lumc.nl
