The Core Registry
Research type
Research Database
IRAS ID
335764
Contact name
S. Faisal Ahmed
Contact email
Research summary
The Core Registry: A European Registry for rare endocrine, mineral and bone disorders
REC name
West of Scotland REC 4
REC reference
23/WS/0167
Date of REC Opinion
1 Dec 2023
REC opinion
Favourable Opinion
Data collection arrangements
The data that shall be reported by participating centres across Europe shall be stored in a secure server at the Leiden University Medical Center. These data will only be able to be linked to the reported patient through a secure identification system which is only known by the clinician who looks after the patient.
Research programme
The Core Registry which is funded by the European Union’s Health Programme is aimed at maximising the opportunity for all patients, health care professionals and researchers to participate and use high-quality, patient-centred registries for rare endocrine and bone conditions covered within the European Reference Network (ERN) on Rare Endocrine Conditions (Endo-ERN) and the ERN for rare Bone & Mineral Disorders (ERN-BOND). The project, launched in February 2018, uses the Core Registry to collect clinician reported and patient reported data that will act as objective markers of clinical outcome. The project is open to all regions of the world.
Research database title
The Core Registry: A European Registry for rare endocrine, mineral and bone disorders
Establishment organisation
Leiden University Medical Center
Establishment organisation address
Building 1, Division 2
Management Office div. 2
Albinusdreef 2, Leiden, The Netherlands
2333 ZA