e-REC surveys

Secondary Surveys Following e-REC Notification

Secondary surveys on e-REC reported cases allow the collection of a brief amount of routine clinical data for quality assurance and for understanding the clinical presentation of the reported condition. The survey questionnaire utilises Webropol, a secure on-line tool that is endorsed and supported by NHS Greater Glasgow & Clyde and NHS Scotland. All information provided will be kept in compliance with the UK Data Protection Act (2018) and General Data Protection Regulation (GDPR 2016/679). These secondary surveys are included within the ethics approval for e-REC. The EuRRECa project team will have access to the complete dataset and will provide data to research teams following approval by EuRRECa’s Data Access Committee. 

The following surveys have recently been performed or are currently active.

Calcium & Phosphate Homeostasis:
Pseudohypoparathyroidism/inactivating PTH/PTHrP signalling disorder (iPPSD) Agnes Linglart and Diane-Alexandra Ertl

Adrenal: Adrenal Gland Disorders and COVID-19 Nicole Reisch

Sex Development & Maturation: XY DSD Anna Nordenstrom and Salma Ali

Glucose & Insulin:  Hyperinsulinism Zdenek Sumnik and Thomas Danne