About the iGO registry
What you need to know.
Introduction
Thus, a network of European experts has established a registry to gather patient data, aiming to improve disease understanding, awareness, and patient care. The registry is registered on ClinicalTrials.gov.
Aims of the registry
The aim of this registry is to enable physicians and scientists inside and outside of Europe to work together in the field of genetic obesity syndromes and to accumulate sufficient data for sound research in this area. Specifically, we strive to
- Assess prevalence rates
- Learn about the natural course of each genetic subtype
- Learn about the prevalence and severity of the associated comorbidities
- Study the contribution of genetic factors to the disease
- Facilitate scientific exchange and cooperation in the field of genetic obesity syndromes
IT framework
The iGO Registry is based on OSSE (Open Source Registry System for Rare Diseases in the EU). This software has been specifically developed for international rare disease registries, is imbedded in various ERNs (European Reference Networks) and is the basis for a range of other registries.
Pillars of the iGO registry:
- A high level of data protection according to the General Data Protection Regulation (EU) 2016/679
- Data handling according to FAIR principles (findable, accessible, interoperable, reusable)
- Registration at ClinicalTrials.gov
- Based on the recommendations of the EU-RD platform (Core data set)
Organizational structure
