e-Reporting Of Rare Conditions (e-REC) v2.0
Research type
Research Database
IRAS ID
314481
Contact name
S. Faisal Ahmed
Contact email
Research summary
An Electronic Reporting System For Rare Endocrine and Bone Conditions Within The European Reference Network For Rare Endocrine Conditions (e-REC)
REC name
West of Scotland REC 4
REC reference
22/WS/0169
Date of REC Opinion
2 Dec 2022
REC opinion
Favourable Opinion
Data collection arrangements
The electronic invitation 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) or ERN BOND (https://ernbond.eu/). On receiving invitation, the doctor enters the number of new cases they have encountered and submits the return. On reporting a case, no identifiable or partially identifiable information will be provided to the Registry Office. The registry platform provides unique IDs for each case reported. 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 Leiden University Medical Centre for the lifetime of the project and supplied to the Endo-ERN Office in Leiden or ERN BOND in Bologna. The project is approved by the LUMC Ethics Committee and the Information Office in Glasgow (Caldicott Guardian)
Research programme
Endo-ERN stands for the European Reference Network on Rare Endocrine Conditions (www.endo-ern.eu). ERN BOND is another ERN on Rarae Bone Conditions. These 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 and bone conditions listed on their websites. The ERN’s main mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine or bone 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 Professore of Endocrine Regstries at LUMC. He 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 and ERN BOND by Prof Luca Sangiorgi in Bologna. Others supporting the Endo-ERN e-Reporting programme include Jillian Bryce in Glasgow and Ana Priego and Tess de Rooij in Leiden.
Research database title
An Electronic Reporting System For Rare Endocrine and Bone Conditions Within The European Reference Network For Rare Endocrine Conditions (e-REC)
Establishment organisation
Leiden University Medical Center
Establishment organisation address
Building 1, Division 2
Management Office div. 2
Albinusdreef 2, Leiden, The Netherlands
2333 ZA