Data Access

Reasons for requiring data from the Core Registry or e-REC

  • Search for cases
  • Designing a study/survey
  • Preparing case for funding
  • Performing a study/survey

Procedure for obtaining data

Searching the Core Registry or e-REC for data at centres other than the user’s own centre is only possible by the project management team. 

The EuRRECa team in Glasgow can provide more extensive support depending on the investigator’s needs and may include:-

  • Advice on study/survey process and design
  • Liaising with Core Registry and e-REC users on behalf of the study investigators
  • Preparing survey reports
  • Developing condition-specific modules

Prospective investigators should contact the office as early as possible so that the EuRRECa team can provide appropriate guidance. You will need to complete the following forms and the EuRRECa team can help you with this.

Once submitted all study documents are sent to the Data Access Committee for approval.

DAC approval process

ACKNOWLEDGEMENT

EuRRECa must be acknowledged on all publications that use the data with the following text.

This project is part of the project ‘777215 / EuRRECa’ and ‘946831 / EuRR-Bone’ which have received funding from the European Union’s Health Programme (2014-2020). The EuRRECa project is also supported by the European Reference Network for rare Endocrine Conditions (Endo-ERN), the European Society of Endocrinology and the European Society for Paediatric Endocrinology’