by sabine | Jan 29, 2021 | Publication
Background Rare endocrine conditions are a heterogeneous group of disorders that often require specialised multidisciplinary care and long-term follow-up. Due to their rarity, collecting sufficient clinical data to improve understanding of disease characteristics,...by sabine | Nov 25, 2020 | Publication
Background Rare disease registries are essential platforms for improving knowledge of rare conditions, supporting research, facilitating collaboration between healthcare professionals, and enabling clinical benchmarking. With the increasing number of rare disease...by sabine | Aug 1, 2020 | Publication
Background European Reference Networks (ERNs) aim to improve access to specialised healthcare and expertise for patients with rare and complex diseases. Within endocrinology, the European Reference Network on Rare Endocrine Conditions (Endo-ERN) brings together expert...by sabine | Jan 1, 2019 | Publication
Background Rare endocrine conditions affect a small proportion of the population and often require specialised multidisciplinary care. Due to the rarity of these conditions, available clinical knowledge is frequently limited and fragmented. Disease registries are...by sabine | Aug 3, 2018 | Publication
Background Rare disease registries are essential tools for improving knowledge of rare conditions, supporting clinical research, facilitating clinical trials, and improving patient care. However, the rapid development of registries across Europe has resulted in...