Registries, data management and analysis (WP5)

Registries, data management and analysis focuses on the coordination of the EuRRECa registry. EuRRECa gathers patient reports that are used for research to increase timely diagnosis of rare endocrine disorders and improve overall clinical outcomes.

Objectives: Increase the number of submissions to the EuRRECa registry, expand the number of diagnostic modules, and increase the dissemination of research and educational information across the Endo-ERN network and the wider endocrine community.

The representatives for WP5 Registries, data management and analysis are:

Faisal Ahmed

Faisal Ahmed Paediatric chair

Leiden University Medical Center (Leiden , Netherlands)

Natasha Appelman-Dijkstra

Natasha Appelman-Dijkstra Adult chair

Leiden University Medical Center (Leiden , Netherlands)

Chris Breen

Chris Breen ePAG representative

Klinefelter’s Syndrome Association (Matlock, United Kingdom)

Giorgio Dal Maso

Giorgio Dal Maso ePAG representative

ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale) (Bologna, Italy)

Johan de Graaf

Johan de Graaf ePAG representative

Dutch Pituitary Foundation (Nijkerk, Netherlands)

Martha Kirchhoff

Martha Kirchhoff ePAG representative

Phosphatdiabetes e.V. (Germany)

Arlene Smyth

Arlene Smyth ePAG representative

Turner Syndrome Support Society (Clydebank, United Kingdom)

Contact form

You can contact the representatives of WP5 “Registries, data management and analysis” directly via email at WP5_registries@endo-ern.eu or use the contact form below.