What is GENRARE
GENRARE is the clinical registry platform for rare and genetic diseases of the Center for Biomedical Network Research (CIBER), coordinated by CIBERER. Its objective is to collect detailed and standardized clinical data on rare diseases to promote research and improve clinical management.
Why is GENRARE necessary?
Rare diseases affect a small number of people, making it difficult to generate robust clinical knowledge. Without a coordinated and standardized effort, data collected in isolation cannot advance the diagnosis, treatment, or comprehensive management of these conditions.
GENRARE emerged as a response to this need, facilitating the collection of quality information and promoting collaboration between multiple centers.
What is a clinical registry?
A clinical registry is a collection of patient data specifically used for disease research or to enable present or future clinical trials. GENRARE includes data from patients diagnosed with rare diseases.
OBJECTIVES
GENRARE’s objectives focus on advancing knowledge and improving the management of rare diseases. Through the collection of standardized clinical data, the platform aims to facilitate research, optimize clinical practice, and promote collaboration between healthcare professionals and patients.
- Comprehensive patient phenotyping
- Understanding the natural history of rare diseases
- Improve clinical management and facilitate trials
- Gather information on quality of life
- Promote research and collaboration
ADVANTAGES OF GENRARE
Common and simplified framework: A single approval from the REC (Research Ethics Committee) allows participation in all existing sub-registries, thanks to:
A common protocol
Governance policies
Standardized models of informed consent
Efficiency and sustainability: Duplication is avoided, data collection is standardized, and long-term maintenance is ensured. The management team is responsible for the registration platform design and maintenance, user administration, and administrative tasks.
GENRARE enables the development of studies with a more robust statistical foundation by pooling standardized clinical data from multiple patients and centers.
It facilitates pattern identification, biomarker validation, clinical trial design, and integration with international networks, expanding the reach of the findings.
Collaborating clinicians incorporate detailed, agreed-upon clinical information from the electronic records of patients participating in the registries.
The information is collected using an electronic data collection notebook developed on REDCap, a widely used and internationally recognized platform.
Clinical staff can participate by recruiting patients and incorporating their clinical data into the registry, and research staff can participate by requesting access to existing data for research purposes.
How to participate?
If you are a clinical staff member or researcher:
To contribute data:
To request access to data for research:
If you are part of a patient association:
Write to us at [email protected] and we will provide you with personalized information.
GLOBAL DATA
> 7850 Patients
> 296 Contributors
> 74 Hospitals
11 active registries
CONTACT
Want to learn more about GENRARE or collaborate with our network?
We're here to answer your questions, provide information, or explore new ways to get involved.