E-Reporting Of Rare Endocrine Conditions (e-REC)
Research type
Research Database
IRAS ID
230815
Contact name
S. Faisal Ahmed
Contact email
Research summary
An Electronic Reporting System For Rare Endocrine Conditions Within The European Reference Network For Rare Endocrine Conditions (e-REC)
REC name
West of Scotland REC 4
REC reference
17/WS/0178
Date of REC Opinion
11 Sep 2017
REC opinion
Favourable Opinion
Data collection arrangements
The electronic reporting ‘card’ that the doctors will receive every month will enquire whether over the last month they have encountered a new case of any of the conditions that have been included in Endo-ERN (www.endo-ern.eu). On receiving the card, the doctor ticks the box for the condition they have encountered and the card is returned to the Office For Rare Conditions. On reporting a case, no identifiable or partially identifiable information will be provided to the Office in Glasgow. However, the Office will provide the reporting doctor with a unique ID for the reported case. This ID will be stored locally with the doctor to link with the actual case. The reported data that are personally unidentifiable will be stored on a secure server in the University of Glasgow for the lifetime of Endo-ERN and supplied to the Endo-ERN Office in Leiden. The project is approved by the Information Governance authorities at the NHS Greater Glasgow & Clyde Health Board and the National Research Ethics Service in the UK.
Research programme
Endo-ERN stands for the European Reference Network on Rare Endocrine Conditions (www.endo-ern.eu). This network represents a group of hospitals across the EU that have been approved by the EU to provide care for a range of rare endocrine conditions listed on its website. Endo-ERN’s main mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine disorders in Europe, through facilitating knowledge sharing and facilitating related healthcare and research.The project will be led by Professor Faisal Ahmed at the Office for Rare Conditions at the University of Glasgow and who also leads the Endo-ERN Working Group for ICT and E-Health, with Professor Domenica Taruscio in Rome and Johan G. Beun from the Netherlands and who is representing patients in Endo-ERN. Endo-ERN is coordinated by Professor Alberto Pereira in Leiden and Professor Olaf Hiort in Lübeck. Others supporting the Endo-ERN e-Reporting programme include Jillian Bryce and Sam Okure in Glasgow and Charlotte van Beuzekom in Leiden.
Research database title
An Electronic Reporting System For Rare Endocrine Conditions Within The European Reference Network For Rare Endocrine Conditions (e-REC)
Establishment organisation
The University of Glasgow
Establishment organisation address
MVLS IT Services
Wolfson School Medical Building
G12 8QQ