Review Article

Challenges and Opportunities for Exploring Patient-Level Data

Table 1

List of evaluated projects.

ProjectStartEndURLDescription

BBMRI20082011http://bbmri.eu/BBMRI connects researchers, biobankers, patient advocacy groups, and pharmaceutical research companies to foster a quicker discovery of new treatments [26]. Their strategy is based on the enrichment and harmonization of biobanks.

BioMedBridges20122015http://www.biomedbridges.eu/BioMedBridges’ goal is to launch a shared e-infrastructure for biological and biomedical data.

BioSHaRe-EU20102015https://www.bioshare.eu/BioSHaRe-EU partners are working to ensure the development of harmonized measures and standardized computing infrastructures.

BRIDGEtoData2011http://www.bridgetodata.org/BRIDGEtoData aims to be an online reference platform describing population healthcare databases for use in epidemiology and health outcomes research.

DDMoRe20112016http://www.ddmore.eu/The Drug Disease Model Resources (DDMoRe) project aims to establish a universal standard framework for modelling drugs and diseases [27, 28].

EHR4CR20112014http://www.ehr4cr.eu/EHR4CR partners built, validated, and deployed a Europe-wide innovative technological platform to reuse EHRs data for clinical research purposes [29].

ELIXIR20102018http://www.elixir-europe.org/ELIXIR project’s goal is to coordinate the collection, quality control, and archiving of large amounts of biological data [30].

EMIF20122018http://www.emif.eu/EMIF’s goal involves the creation of an innovative and connected patient registry catalogue that will enable researchers and pharmaceutical companies to search for patient-level data based on the databases’ digital fingerprints [31].

ESGI20112015http://www.esgi-infrastructure.eu/ESGI’s goal is to integrate and standardise current and emerging technologies, providing access to infrastructures so that a broad group of European researchers can use the new technologies.

eTRIKS20122017http://www.etriks.org/eTRIKS’ objective is to address knowledge management gaps by building a sustainable translational research informatics/knowledge management platform and to provide additional sustainable services.

EU-ADR20082012https://bioinformatics.ua.pt/euadr/EU-ADR project aimed developing a unique computerized system to detect adverse drug reactions (ADRs), supplementing spontaneous reporting systems [32].

EURenOmics20122018http://www.eurenomics.eu/EURenOmics work is based on rare kidney diseases, where the project seeks to establish more accurate diagnoses strategies and improve clinical care.

Euro-BioImaging20102014http://www.eurobioimaging.eu/Euro-BioImaging’s main work covered the improvement of existing research infrastructures on a large scale.

GEN2PHEN20082013http://gen2phen.org/GEN2PHEN was created to unify human and model organism genetic variation databases towards increasingly holistic views into Genotype-to-Phenotype (G2P) data and to link this system into other biomedical knowledge sources via genome browser functionality [33].

NeurOmics20122018http://rd-neuromics.eu/NeurOmics’ research objectives feature the study of neurodegenerative and neuromuscular diseases in an attempt to explore Omics technologies to improve diagnosis, treatments, and general patient care.

OMOP20082013http://omop.org/OMOP’s goal was to design experiments testing a variety of analytical methodologies in a range of data types to look for drug impacts, going towards a complete database analysis standard [34].

Oncotrack20112016http://www.oncotrack.eu/Oncotrack deploys several methods for systematic next generation oncology biomarker development [35, 36].

OpenPHACTS20112014http://www.openphacts.org/OpenPHACTS works with the integration of a relevant and continuously expanding subset of distributed heterogeneous data sources into one “virtual resource,” via the creation of a semantic interoperability layer [37].

RD-Connect20122018http://rd-connect.eu/RD-Connect will launch an integrated platform connecting databases, registries, biobanks, and clinical bioinformatics for rare diseases research [38].

Sentinel2008http://www.fda.gov/Safety/FDAsSentinelInitiative/default.htmSentinel is a USA-based electronic system that will transform FDA’s ability to track the safety of drugs, biologics, and medical devices [39, 40]. This initiative aims to develop and implement a proactive system that will complement existing systems that the FDA has in place to track reports of adverse events linked to the use of its regulated products.