Join the EuRREB Core Registry as a Patient

If you would like to participate as a patient or as a parent of a patient, even if your doctor is not participating in the registry, you can still contribute. We will collect the minimal clinical information (Core data fields) needed to create a record in the Core Registry.

We use Castor, a secure and validated electronic data capture platform, to collect your information and  documents. Castor complies with all applicable data protection regulations, including the General Data Protection Regulation (GDPR). Your information is stored securely in Castor, then pseudoanonymized and transferred to the registry.

Once your record is created, you will receive an automatically generated invitation to activate your account. After activation, you will be able to view the information about you or your child and complete surveys or quality‑of‑life questionnaires.

How to Participate

Step 1: Prepare your documents

  • Download the Patient Information Sheet with Informed Consent in your preferred language. Read the information, sign the informed consent on the last page and have a signed version ready to upload (PDF, JPEG, PNG).
  • Ask your doctor for a diagnosis confirmation letter  (PDF, JPEG, PNG). The required information can be found in our template; you may use our template or another document (PDF, JPEG, or PNG).
  • These documents will be stored securely in Castor. You will receive a copy of the signed informed consent by email from: registries@lumc.nl.

Step 2: Complete the form

  • Go to the online form and complete the questions, including uploading the documents prepared in Step 1.

Step 3: Activate your account

  • We will use the email address and information you provided to create your account in the EuRREB Core Registry. Your data will be anonymised.
  • You will receive an automatic email with a link to activate your Core Registry account. Follow the instructions in the email. If you have not received it  within 2 weeks, please contact us at registries@lumc.nl.

Step 4: Log in and complete the survey

  • Log in to the Core Registry using your email address, password, and the one‑time PIN.
  • Complete your first survey by answering questions about your health or your child’s health. The survey includes general information and patient-reported outcome or quality-of-life questionnaires. It usually takes about ? minutes to complete. Your responses help us better understand rare endocrine and bone conditions and improve future research and care.
  • You may use the step-by-step guide if you need help logging in or completing the survey.

Step 5: Stay involved

  • Keep your contact details up to date in the Core Registry. You can log in to your account at any time to view or update your information.
  • You may receive invitations to complete follow-up surveys or quality-of-life questionnaires from time to time. Your participation is voluntary, but every response helps improve research and care for people living with rare endocrine and bone conditions.

Thank you for participating!

Thank you for contributing to the EuRREB Core Registry. By sharing your information and completing surveys, you help improve our understanding of rare endocrine and bone conditions. Your contribution supports researchers and healthcare professionals in developing better knowledge, care, and treatment options for patients living with these rare diseases.

Important Notes

  • You will not be contacted directly by the registries team. All communication will be sent automatically through the Core Registry platform.
  • You may withdraw your consent to participate at any time.
  • For questions, check our FAQ Patient section on our website or contact us at registries@lumc.nl – but please do not include personal information in your message.