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ea0081oc12.1 | Oral Communications 12: Reproductive and Developmental Endocrinology | ECE2022

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

Priego Zurita Ana Luisa , Ali Salma Rashid , Bryce Jillian , Cools Martine , Danne Thomas , Dekkers Olaf M , Hiort Olaf , Katugampola Harshini , Linglart Agnes , Netchine Irene , Nordenstrom Anna , Patocs Attila , Pereira Alberto M , Persani Luca , Reisch Nicole , Smyth Arelene , Sumnik Zdenek , Taruscio Domenica , Visser Edward , Appelman-Dijkstra Natasha , Ahmed Faisal

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 2019 and December 2021.<p class...

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ea0081p400 | Pituitary and Neuroendocrinology | ECE2022

European Registries for Rare Endocrine Conditions (EuRRECa): results from the core registry on hypothalamic and pituitary conditions

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

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 ...

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ea0081p180 | Reproductive and Developmental Endocrinology | ECE2022

European Registries for Rare Endocrine Conditions (EuRRECa): results from the e-Reporting platform for rare conditions (e-REC)

Rashid Ali Salma , Bryce Jillian , Luisa Priego Zurita Ana , Cools Martine , Danne Thomas , Katugampola Harshini , Dekkers Olaf M. , Hiort Olaf , Linglart Agnes , Netchine Irene , Nordenstrom Anna , Patocs Attila , M Pereira Alberto , Persani Luca , Reisch Nicole , Smyth Arelene , Sumnik Zdenek , Taruscio Domenica , Visser Edward , Appelman-Dijkstra Natasha , Ahmed Faisal

Background: EuRRECa (eurreca.net) is a web-based project that supports professional networks such as European Reference Networks (ERNs) in capturing standardised clinical information. The project includes an e-reporting registry (e-REC), which can be used to perform regular surveillance of specific events. Since 2018, e-REC has been used by the ERN for rare endocrine conditions (Endo-ERN) to understand the number of new clinical encounters at centres within this network.<p...

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ea0056p677 | Paediatric endocrinology | ECE2018

Awareness & participation in rare disease registries within the European reference network on rare endocrine conditions (Endo-ERN)

Ali Salma R , Bryce Jillian , Cools Martine , Korbonits Marta , Beun Johan G , Taruscio Domenica , Beuschlein Felix , Danne Thomas , Dattani Mehul , Dekkers Olaf , Linglart Agnes , Netchine Irene , Nordenstrom Anna , Patocs Attila , Persani Luca , Smyth Arlene , Sumnik Zdenek , Edward Visser W , Hiort Olaf , Pereira Alberto M , Faisal Ahmed S

Background: Registries are of key importance for a centre of expertise. Endo-ERN consists of 71 reference centres (RCs) that cover several groups of rare endocrine conditions within 8 themes (www.endo-ern.eu). It is unclear if awareness, participation and availability of registries is uniform for all conditions within Endo-ERN.Objective: To determine the extent of engagement in registries of Endo-ERN members.Methods: Endo-ERN RC le...

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Endocrine Abstracts

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

European Registries for Rare Endocrine Conditions (EuRRECa): results from the core registry on hypothalamic and pituitary conditions

European Registries for Rare Endocrine Conditions (EuRRECa): results from the e-Reporting platform for rare conditions (e-REC)

Awareness & participation in rare disease registries within the European reference network on rare endocrine conditions (Endo-ERN)

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