Our Registries

Patients

Our Registries

Our patient registries are databases that contain information about people diagnosed with rare endocrine or rare bone / mineral conditions.

We collect data on these rare endocrine and bone conditions to do research and improve the healthcare for our patients.

We have two different databases:

  • e-REC an e-reporting tool that captures new clinical encounters. Your data might be shared in this registry, but only as an anonymous number. The clinician only writes down how many people they saw with a certain condition and you might be one of them. There is no way that number can lead back to you.
  • Core Registry collects general information on all patients in the registry but also condition-specific in some cases. Patients can also access the Core Registry to view the information their doctor added and to complete questionnaires. Your doctor will add your data to the Core Registry only after you give your permission via a Consent Form. In this form you can also tell us if and how you want your data to be shared.

Before you agree to share your information in our Core Registry it is important that you understand what it is and what will be done with the information you provide. Please read the Patient Information Sheet before giving your consent to share your data in the Core Registry.

You can also find answers to some of the questions you might have in our FAQ section. Of course you can always ask your doctor or contact us at registries@lumc.nl.