hrp0095fc3.6 | Early Life and Multisystem Endocrinology | ESPE2022

The European Registries for Rare Endocrine Conditions (EuRRECa): the Use of a Core Registry for Collecting Common Data Elements and Clinician and Patient Reported Outcomes

Luisa Priego Zurita Ana , Ali Salma R , Bryce Jillian , Cools Martine , Danne Thomas , Dekkers Olaf M. , Hiort Olaf , Katugampola Harshini , Linglart Agnes , Netchine Irene , Nordenström Anna , Patócs Attila , Pereira Alberto M , Persani Luca , Reisch Nicole , Smyth Arlene , Šumnik Zdenek , Taruscio Domenica , Edward Visser W , M Appelman-Dijkstra Natasha , Faisal Ahmed S

Introduction: The European Registries for Rare Endocrine Conditions (EuRRECa) was created in collaboration with the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the European Society for Paediatric Endocrinology and the European Society of Endocrinology to support the needs of the endocrine community.Aim: To describe the patient population and data entered in the EuRRECa Core Registry between June 2...

hrp0094p1-89 | Pituitary A | ESPE2021

The Pituitary Tumour Module: Developing a Condition Specific Module within the European Registries for Rare Endocrine Conditions (EuRRECa)

Priego Zurita Ana Luisa , Appelman-Dijkstra Natasha , Biermasz Nienke , Bryce Jillian , Burman Pia , Castano Luis , Dattani Mehul T. , Dekkers Olaf M. , Gan Hoong-Wei , Gaztambide Sonia , Katugampola Harshini , Lasolle Helene , Muller Hermann L. , Raverot Gerald , Rica Itxaso , van Beuzekom Charlotte N. , Vries Friso de , Najafabadi Amir H. Zamanipoor , Ahmed S. Faisal , Pereira Alberto M. ,

Introduction: The European Registries for Rare Endocrine Conditions (EuRRECa) project aims to support the needs of the endocrine and bone community by facilitating the collaboration between patients, health care professionals and researchers across Europe and beyond. It is a project funded by the European Union’s health programme and is the affiliated registry of the European Reference Network for Rare Endocrine Conditions (Endo-ERN). It consists of two r...