Skip to content
registries@lumc.nl
  • Our Registries
  • FAQ
  • Publications
EuRREB
  • About
    • About EuRREB
      • Mission and Vision
    • Steering Committee
    • Data Access Committee
    • Patient Advisory Board
    • Project Management Team
  • News
    • News
      • Newsletter
    • Events
      • Previous Events
    • Reports
    • Media & Downloads
  • Research
    • Publications
      • Publications Overview
      • Publication Guidelines
    • Core Registry
      • Condition Specific Modules
      • Studies Overview
    • e-REC
    • Data Dictionaries
    • Obtaining Registry Data
    • Ethics Approval
  • Patients
    • Our Registries
    • Patient Information
    • Patient Information Folders & Consent Forms
    • Tools and Outcomes
    • Contribute as a patient
  • Contribute
    • Why join EuRREB?
    • Join as new centre
    • Participating Centres
    • Stakeholders
  • Contact
    • Contact us
    • Drop-in sessions
  • Login
Select Page

Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol

by sabine | Feb 3, 2023 | Publication

Background Although differentiated thyroid carcinoma (DTC) is the most frequent endocrine pediatric cancer, it is rare in childhood and adolescence. While tumor persistence and recurrence are not uncommon, mortality remains extremely low. Complications of treatment...

Meeting Report from 2nd ICCBH-ERN BOND Spinal Complications in Children and Adults with Achondroplasia

by sabine | Jul 2, 2022 | Publication

Abstract A pre-meeting workshop on spinal complications in children and adults with achondroplasia was held in Dublin, Ireland at the 10th International Conference on Children’s Bone Health (ICCBH) (2–5 July 2022). The pathophysiology, natural history and...

New cases of rare bone and mineral conditions reported within the first 18 months of the European registry for rare bone and mineral conditions

by sabine | May 1, 2022 | Publication

Background The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) is closely linked to the European Reference Networks on Rare Bone Diseases (ERN BOND) and Rare Endocrine Conditions (Endo-ERN) and with its registry EuRRECa. It is however open to all...

The European registry for rare bone and mineral conditions (EuRR-Bone): results of a survey on osteogenesis imperfecta and fibrous dysplasia McCune-Albright syndrome

by sabine | May 1, 2022 | Publication

Background EuRR-Bone offers an electronic reporting system (e-REC) that captures the occurrence of rare conditions within reference networks such as ERN BOND and Endo-ERN. Secondary surveys following the reported cases in e-REC collect a brief amount of data for...

Prenatal dexamethasone treatment for classic 21-hydroxylase deficiency in Europe

by sabine | Mar 23, 2022 | Publication

Objective To assess the current medical practice in Europe regarding prenatal dexamethasone (Pdex) treatment of congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency. Design and methods A questionnaire was designed and distributed, including 17...
« Older Entries
Next Entries »

Visiting address

Leiden University Medical Center
Department of Endocrinology
Room C7-57, route 222
Albinusdreef 2
2333 ZA Leiden, the Netherlands

Join our newsletter

Success!

Subscribe

Follow us

  • Follow
  • Follow

Privacy policy | Disclaimer | Copyright © 2025 EuRREB | All rights reserved | Website made by Sabine Geerlings

X