To help rare disease researchers find the biosamples they need, RD-Connect has developed two systems: Registry & Biobank Finder and the Sample Catalogue.
Registry & Biobank Finder is a global directory that allows finding biobanks and patient registries that store information and samples from patients with the rare disease of interest.
Sample Catalogue lets the users browse and request individual samples stored in rare disease biobanks and provide information about a range of biomaterials such as primary cells, tissue, DNA, serum, RNA and cell lines.
In addition, RD-Connect offers biobanks streamlined workflow, document templates and Standard Operation Procedures (SOPs) for sample handling. It also addresses the requirement for essential data elements in the Informed Consent for protection of patient rights, and return of research results to the patient as well as policies involved in “incidental findings”.
Benefits for the biobanks
To increase the impact on rare disease research, we work closely with BBMRI-ERIC, a major European research infrastructure. To learn more, have a look at the slides below explaining the role of BBMRI in stimulating rare disease research.