hrp0098p1-93 | Sex Endocrinology and Gonads 1 | ESPE2024

EuRRECa Core Registry: results from the Gender Incongruence module

Ciancia Silvia , Klink Daniel , Hannema Sabine , Claahsen-van der Grinten Hedi , Cherenko Mariya , Luisa Priego Zurita Ana , Faisal Ahmed Syed , Cools Martine

Background: Access to transgender healthcare for adolescents varies largely across Europe (and beyond), depending on the regulations and healthcare system of the country where they live. In some countries, obtaining transgender healthcare can be almost impossible. Specifically, the age at which puberty suppression (PS) and subsequent gender-affirming hormones (GAH) are offered can vary widely. Medical treatment for adolescents with gender incongruence (GI) is ...

hrp0097rfc2.4 | Bone, Growth Plate and Mineral Metabolism | ESPE2023

Documentation of inactivating PTH/PTHrP Signaling Disorders (Pseudohypoparathyroidism) cases in EuRRECa / EuRR-Bone: a challenging, but worthwhile journey

Ertl Diana-Alexandra , Mantovani Giovanna , Perez de Nanclares Guiomar , Cherenko Mariya , M. de Rooij Tess , L Priego Zurita Ana , M Appelman- Dijkstra Natasha , S Ahmed Faisal , Bryce Jillian , Linglart Agnès

Background: A new classification of pseudohypoparathyroidism is available (Thiele et al. 2016, J Endocrinol). The phenotype variability of inactivating PTH/PTHrP Signaling Disorders (iPPSD, former pseudohypoparathyroidism) cases is still very challenging, even for experts. Thus, it is crucial to collect data in a centralized manner for future investigation.Methods: The EuRRECa/EuRR-Bone registries are the first ...

hrp0097p1-411 | Bone, Growth Plate and Mineral Metabolism | ESPE2023

The European Registries for Rare Bone and Mineral Conditions (EuRR-Bone): Collecting Core Data Elements and Clinician and Patient-Reported Outcomes

Luisa Priego Zurita Ana , Cherenko Mariya , Alves Inês , Boarini Manila , Grasemann Corinna , Högler Wolfgang , Kassim Javaid M , Linglart Agnès , Mohnike Klaus , Mordenti Marina , M de Rooij Tess , Roos Marco , Sangiorgi Luca , Skarberg Rebecca , Soucek Ondrej , Faisal Ahmed S , M Appelman-Dijkstra Natasha

Introduction: The European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) was created in collaboration with the European Reference Network on Rare Bone Diseases (ERN BOND) and the European Reference Network on Rare Endocrine Conditions (Endo-ERN) to support the needs of healthcare providers, patients and researchers by providing high-quality registries. The Core Registry collects a set of Core Data Elements as well as longitudinal patient and clin...