Coordinated Access to Data and Services

Pillar 2 “Coordinated Access to Data and Services for transformative rare diseases (RD) research” aims at rationalizing, optimizing and increasing potential of existing resources and services, in order to decrease fragmentation and maximize European capacity to make better and more efficient research on RD . Pillar 2 will develop a FAIR Virtual Platform for RD allowing to find and query relevant resources (catalogues of registries, biobanks, data deposition platforms, animal models, cell lines and service infrastructures) and research data, samples, tools and standards to support and accelerate rare diseases research.

As omics become more prevalent in clinical practice, Pillar 2 will set mechanisms to continuous integration of new data elements, standards and tools so as to provide European research with a unique ecosystem that will efficiently translate research into better care and medical innovation. In addition, pilot and proof-of-concept projects will be put in place to enable multidisciplinary, holistic approaches for rare disease diagnostics and therapeutics and fostering creation of complete diseases pathways.

The usefulness of the developed tools and their upscaling will be ensured through mechanisms that places end-users, not least European Reference Networks (ERNs), at the driver seat in strategic planning. Researchers, including those in funded research projects (Fundings and Calls) will benefit from the Virtual Platform to access and query data and resources, and to deposit their research results.