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Rare Disease COVID-19 Task-force

ESE and ENDO-ERN conducted an initiative to collect data on patients with rare endocrine conditions and COVID-19

During the COVID-19 pandemic, the ESE Rare Disease Committee, alongside Endo-ERN,  engaged in an initiative to collect essential data concerning specific groups of patients with rare endocrine conditions, who are also affected by COVID-19.

The European Registries for Rare Endocrine Conditions (EuRRECa) project, supported by both Endo-ERN and ESE, developed an e-reporting tool (e-REC) which has been fully operational within a robust governance and ethical framework and which does not require individual patient consent.

Throughout 2020 and 2021, this platform was operational and open to all centres across the world to report a new confirmed or suspected case of COVID-19 in patients with an existing endocrine or metabolic bone condition.

Leading experts convened regularly to form the following Rare Endocrine Disease Study Groups. Along with Simona Glasberg and Alberto Pereira, the leads of this project and Chairs of the ESE Rare Disease committee, and Faisal Ahmed, the task leader and PI of e-REC, these Study Groups actively promoted the use of e-REC as a surveillance tool and worked to define condition-specific surveys on the following areas:

  • Adrenal (led by Nicole Reisch and Maralyn Druce)
  • Bone (Calcium and phosphate conditions led by Camilla Schalin-Jantti and Maria-Luisa Brandi; bone dysplasia led by Natasha Appelman-Dijkstra and Ana Priego)
  • Glucose and Insulin (led by Anton Luger and Manuel Domingo)
  • Genetic Endocrine Tumours (led by Krystallenia Alexandraki and Frederic Castinetti)
  • Growth and Genetic Obesity (led by Gudmunder Johannsson and Stavroula Paschou)
  • Pituitary (led by Niki Karavitaki and Nienke Biermasz)
  • Sex Development and Maturation (led by Luca Persani and Jacques Young)
  • Thyroid (led by Monica Marazuela and Laura Fugazzola)

Overall, there were a total of 29 centres from 15 countries that engaged in this initiative, with a total of 317 cases reported (274 adult and 43 child). Data from this initiative has been published in peer reviewed journals, and also presented at different meetings:

  • Nowotny HF, et al. Outcome of COVID-19 infections in patients with adrenal insufficiency and excess. 2023. Endocrine Connections (see here)
  • De Groot CJ, et al. Clinical management of patients with genetic obesity during COVID-19 pandemic: position paper of the ESE Growth & Genetic Obesity COVID-19 Study Group and Rare Endo-ERN main thematic group on Growth and Obesity. 2021. Endocrine (see here)
  • e-REC Capturing The Occurrence and Burden Of COVID-19 Infections In People With Rare Genetic Obesity Disorders. ESPE 2022 | Poster Category 1: Fat Metabolism and Obesity (see here)
  • The use of e-REC for capturing the occurrence of covid-19 infections in people with rare endocrine conditions. ECE 2021 | Oral Communications 14: Across Endocrinology (see here)
  • The Use Of e-REC For Capturing The Occurrence Of COVID-19 Infections In People With Rare Endocrine Conditions. ESPE 2021 | Free Communications: Fetal Endocrinology and Multisystem Disorders (see here)

You can find out more about the functionality of e-REC and EuRRECa here. If you need any assistance, please email the EuRRECa team at registries@lumc.nl.