ESPE Abstracts (2021) 94 P1-89

1Department of Medicine, Division of Endocrinology, Leiden University Medical Centre, Leiden, Netherlands; 2University of Glasgow, Office for Rare Conditions, Glasgow, United Kingdom; 3Department of Endocrinology, Skane University Hospital Malmö, University of Lund, Lund, Sweden; 4Hospital Universitario Cruces, UPV/EHU, Biocruces Bizkaia, CIBERDEM/CIBERER, Bilbao, Spain; 5Genetics & Genomic Medicine Programme, University College London Great Ormond Street Institute of Child Health, London, United Kingdom; 6Department of Paediatric Endocrinology, Great Ormond Street Hospital for Children, London, United Kingdom; 7Endocrinology Department, Reference Center for Rare Pituitary Diseases HYPO, Groupement Hospitalier Est, Hospices Civils de Lyon,, Bron, France; 8Department of Pediatrics and Pediatric Hematology/Oncology, University Children’s Hospital, Klinikum Oldenburg AöR, Oldenburg, Germany; 9Department of Neurosurgery, Leiden University Medical Center, Leiden, Netherlands; 10University of Glasgow, Developmental Endocrinology Research Group, Royal Hospital For Children, Glasgow, United Kingdom

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 registries: an electronic reporting tool, e-REC (e-Reporting of Rare Conditions), which collects the number of new cases encountered every month, and the core registry, which collects a set of core data elements and allows the registering of new and existing patients. e-REC has been collecting new cases of endocrine conditions since 2018. To date, pituitary adenoma is the most commonly reported condition with over 1800 cases reported so far.

Aim: To develop a pituitary tumour module within the EuRRECa core registry for the registering of cases of this condition. A secondary aim is to detect cases showing aggressive tumour behaviour, including aggressive pituitary tumours and carcinomas.

Methods: A group of experts from Endo-ERN, ESE and ESPE in the field of hypothalamic and pituitary disorders as well as pituitary tumours met remotely on several occasions between December 2020 and March 2021 to develop a consensus on relevant data fields, including aggressive pituitary tumour.

Results: A total of 40 variables were grouped in 10 domains that collect several aspects of the care of patients with pituitary tumours. These 10 domains included clinical phenotype, visual impairment, secreted hormones, medical therapy, surgical therapy and irradiation therapy, imaging, genetics, therapy outcomes and patient status. Questions aimed at identifying aggressive tumours were included in the imaging section. The module will be incorporated into EuRRECa’s core registry platform and will be available to complete if the diagnosis of any form of pituitary tumour is selected. Details of these domains will also be widely disseminated through EuRRECa’s data dictionary. The expert group will advise on the frequency for the completion of this module.

Conclusion: Pituitary tumour is the most reported condition in e-REC. The development of a dedicated registry will provide the clinicians with the opportunity of sharing aspects of the disease and care of their patients with health care professionals and the research community. A working group consisting of experts across the patient age span from several centres across Europe proved to be a successful strategy in reaching consensus rapidly.

Volume 94

59th Annual ESPE (ESPE 2021 Online)

22 Sep 2021 - 26 Sep 2021

European Society for Paediatric Endocrinology 

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