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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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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 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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