by sabine | Feb 1, 2022 | Publication
Design and development of a European registry for parathyroid carcinoma cases within the scope of the European Registries for Rare Endocrine Conditions (EuRRECa) Parathyroid carcinoma (PC) is an extremely rare malignant endocrine tumor of the parathyroid glands. Given...by sabine | Jun 1, 2021 | Publication
New cases of rare bone and mineral conditions reported within the first 18 months of the European registry for rare bone and mineral conditions Read publication Overview publication Title New cases of rare bone and mineral conditions reported within the first 18...by sabine | May 1, 2021 | Publication
Supporting international networks through platforms for standardised data collection—the European Registries for Rare Endocrine Conditions (EuRRECa) model Abstract Rare endocrine pathology is manifested by either a deficiency or excess of one or more hormones. These...by sabine | Apr 1, 2021 | Publication
The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry Rare disease (RD) registries aim to promote data collection and sharing, and facilitate multidisciplinary collaboration with the overall aim of improving...by sabine | Mar 1, 2021 | Publication
Society for Endocrinology UK Guidance on the initial evaluation of a suspected difference or disorder of sex development (Revised 2021) Abstract It is paramount that any child or adolescent with a suspected difference or disorder of sex development (DSD) is assessed...by sabine | Feb 1, 2021 | Publication
Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions Abstract Background Understanding the natural history of rare bone and mineral conditions is essential for improving clinical practice and the development of new diagnostics...