Biosamples data

Having access to high quality human biosamples (such as DNA or blood samples) is necessary for successful rare disease research. Biosamples help researchers study the underlying mechanisms of rare diseases, develop new diagnostic techniques and identify potential therapeutic targets. They also allow researchers to validate novel treatments.

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. Read more>>

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 (coming soon). Read more>>

In addition, the 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”.

Timeline for the work on biobanking
The RD-Connect biobanking team is continuously working on further developing the network of biobanks and making biosamples findable and accessible to researchers. The graph presents the timeline for achievements planned until May 2018.

Rare disease biobanks may join the RD-Connect platform and contribute to the Sample Catalogue and to Registry & Biobank Finder. To ensure high quality of biosample data, all participating biobanks need to be first approved by the Panel for Biobank Assessment. Read more about Biobank Assessment process>>

Benefits for the biobanks

By contributing to the RD-Connect platform, biobanks can increase their visibility in a global setting and benefits with the possibility to:

  • increase sample and data acquisition and sharing
  • establish new collaborations and enhance networking activities in the rare disease field
  • maximize the impact of your Institution by connecting clinical and bioinformatics data generated from patients’ biosamples
  • access training and material on Standard Operating Procedures and policies according to international standards
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