We make use of computing resources such as relational databases and cloud-based services to develop data collection and management systems to record, store and analyze clinical trial data. We are compliant with the General Data Protection Regulation (GDPR) and implement the highest standards to ensure data integrity across the clinical studies we sponsor and research projects we support.
Our custom-built electronic case report form (eCRF) platform provides a secure and private workspace for clinical researchers to capture and manage demographic and clinical data including laboratory reports, medications and adverse events during the course of ongoing patient care or as part of a clinical trial.
Features:
The EF CLIF Data Hub is a web-based environment, where researchers can access omics and clinical data securely. When patients give consent to having blood and other tissue samples collected, processed, and analyzed as part of any of our large observational studies, genomic, transcriptomic, proteomic and/or metabolomic data is pseudoanonymized and stored along with any other data in our servers accessible through the EF CLIF Data Hub. Clinical data complements omics data providing in-depth information about patients’ management and disease progression.
Features:
Clinical data
Clinical data complements genomic data providing in-depth information about patients’ management and disease progression. Through our elecronic case report forms, we collect patient clinically relevant data including:
Patients with acute decompensation of cirrhosis (without ACLF) | Patients with ACLF (at hospital admission) | Patients that develop ACLF | Total | |
---|---|---|---|---|
No. of participants | 2504 | 899 | 432 | 3835 |
Quality of life data
EQ-5D assessess self-reported health status of participants in our studies considering mobility, self-care, usual activities, pain/disconfort and anxiaty/depression.
Samples and omics data
European origin (no. of participants) | Latin American origin (no. of participants) | Total amount of data | |
---|---|---|---|
Genomic data | 1607 | 1274 | 123 Gb |
Lipidomic data | 1607 | 1274 | - |
Metabolomic data | 1787 | 589 | - |
Proteomic data | 150 | - | - |
Transcriptomic data | 945 | 766 | 15 Tb |
Samples available | - | - | 227,740 |
Samples available include blood RNA, peripheral blood mononuclear cells, buffy coat, serum, plasma, urine, saliva, ascitic fluid, hair, stool, and solid tissue from liver biopsy.
To access EF CLIF datasets and biological samples, researchers must first submit a project proposals through the EF CLIF Data Hub. Proposals are then assessed by the Sample and Data Usage Committee (SDUC) who approves access to our samples and data. Researchers who are granted access to the EF CLIF Data Hub can use the data we store to generate further knowledge that can lead to improve diagnosis, prognosis, and treatment of chronic liver disease.
European Foundation for the Study of
Chronic Liver Failure
Travessera de Gràcia 11, 7th floor
08021 Barcelona, Spain
© European Foundation for the Study of Chronic Liver Failure 2024
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