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.

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 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.

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.

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.