ECE2022 Poster Presentations Pituitary and Neuroendocrinology (127 abstracts)
European Registries for Rare Endocrine Conditions (EuRRECa): results from the core registry on hypothalamic and pituitary conditions
Ana Luisa Priego Zurita 1 , Natasha Appelman-Dijkstra 1 , Nienke Biermasz 1 , Jillian Bryce 2 , Pia Burman 3 , Luis Castaño 4 , Mehul Dattani 5 , Olaf M. Dekkers 1 , Benedetta Fibbi 6 , Hoong-Wei Gan 7 , Sonia Gaztambide 4 , Gabriele Haeusler 8 , Florentina Haufler 8 , Harshini Katugampola 5,7 , Lasolle Hélène 9 , Hermann L Müller 10 , Gerald Raverot 9 , Itxaso Rica 4 , Charlotte van Beuzekom 1 , Zdenek Sumnik 11 , Friso de Vries 1 , Amir Zamanipoor Najafabadi 12 , Faisal Ahmed 1,2,13 & Alberto M Pereira 1
1Leiden University Medical Centre, Department of Medicine, Division of Endocrinology, Leiden, Netherlands; 2University of Glasgow, Office for Rare conditions, Glasgow, United Kingdom; 3Skane University Hospital Malmö, University of Lund, Department of Endocrinology, Lund, Sweden; 4Hospital Universitario Cruces, UPV/EHU, Biocruces Bizkaia, CIBERDEM/CIBERER, Bilbao, Spain; 5University College London Great Ormond Street Institute of Child Health, Genetics & Genomic Medicine Programme, London, United Kingdom; 6Careggi University Hospital, Endocrinology Unit, Florence, Italy; 7Great Ormond Street Hospital for Children, Department of Paediatric Endocrinology, London, United Kingdom; 8Medical University of Vienna, Department of Pediatrics and Adolescent Medicine, Vienna Bone and Growth Center, Vienna, Austria; 9Reference Center for Rare Pituitary Diseases HYPO, Groupement Hospitalier Est, Hospices Civils de Lyon, Endocrinology Department, Bron, France; 10University Children’s Hospital, Klinikum Oldenburg AöR, Department of Pediatrics and Pediatric Hematology/Oncology, Oldenburg, Germany; 11Charles University 2 nd Faculty of Medicine and University Hospital Motol, Department of Pediatrics, Prague, Czech Republic; 12Leiden University Medical Centre, University Neurosurgical Center Holland, Leiden, Netherlands; 13University of Glasgow, Developmental Endocrinology Research Group, Royal Hospital For Children, GLASGOW, United Kingdom
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. The Core Registry, one of its platforms, enables the collection of longitudinal patient and clinician reported outcomes. A module collecting aspects of the care and outcomes of the patients with pituitary tumours has been active since November 2021.
Aim: To describe the population registered in the EuRRECa Core Registry between June 2019 and December 2021 in the Hypothalamic and Pituitary group of conditions.
Methods: Core Registry clinical contributors are invited to register new and existing cases of endocrine conditions seen in their centres. Diseases are mapped according to the Orphanet nomenclature. A core data set and a condition-specific data set collect information regarding demographics, diagnosis and outcomes.
Results: A total of 159 cases have been registered by 5 centres from 4 countries. Of 159 cases, 5(3%) were between 0-9 years of age, 6(4%) between 10-17 years and 148 (93%) over 18 years. In the latter, the commonly reported conditions include pituitary adenoma 91/148 (62%) and acquired hypopituitarism 45/148 (30%) followed by suprasellar tumours 6/148 (4%) and other sellar and parasellar tumours 3/148 (2%). Of 91, 38(41%) were non-functioning pituitary adenoma, 20 were prolactinoma (22%), 16 (18%) were unspecified functioning pituitary adenoma, 12(13%) were unspecified pituitary adenoma, 3 (3%) were somatomammotropinomas and 2 (2%) were corticotroph adenomas. Diagnosis was reported by the combination of clinical assessment, biochemistry and MRI in 84/159 cases (53%), histology was added in 10 cases (6%) and genetic testing in 3(2%). Of 159 cases, 154(97%) were under active follow-up. Participation in a different detailed disease registry was reported in 15/159 cases. Biobank samples were available in 12/159 (8%). Twenty-one patients (13%) had expressed an interest in using the patient platform, 16(76%) had been sent an invitation to join and of these, 4(25%) activated their account. Of 159, 67 cases have been entered into the pituitary tumour module.
Conclusion: Pituitary adenoma is the most reported condition in the Hypothalamic and Pituitary group with most patients being over 18 years. These results support the creation of a pituitary adenoma detailed module which provides clinicians the opportunity of sharing aspects of the condition and care of their patients with health care professionals and the research community.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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