Rare Disease Biobanks are invited to publish their collection the RD-Connect Catalogue

10 December 2014

 

Access to high-quality biological materials is essential for research on rare diseases. The new RD-Connect Catalogue of rare disease biological samples aims to unite rare biomaterials by facilitating sample search, and creating a strong network of rare disease biobanks in Europe. The sample catalogue, together with patient databases and clinical bioinformatics, is one of the three essential assets of the RD-Connect integrated platform.

The IT infrastructure of the sample catalogue has been built, and we are now inviting rare disease biobanks to register their interest to publish their sample collection. The RD-Connect ID-Card is the entry point where biobanks can be enlisted and be a part of the rare disease network. Many benefits that bring a positive impact on the operations of the rare disease biobanks are available when they participate:

• Visibility: listing biosamples via RD-Connect can lead to increased visibility in a global setting and increased sample acquisition and sharing. These facilitate the establishment of new collaborations and enhance networking activities in the field of RD research.

• Impact: maximise the impact of biobanks by connecting clinical to bioinformatics data generated from patients’ biological samples. Pooling of data supports the advancement of research in rare diseases.

• Quality standards & Training: biobanks will have access to training material on SOPs and policies according to international standards. These materials contribute the quality system and operational development of rare disease biobanks.

• Interoperability: particular attention is paid to the crosstalk of the sample catalogue with the US and Australian counterparts to ensure the platform is internationally interoperable. System optimisation is essential for resource sharing in the rare disease context.

Existing European rare disease biobank networks such as EuroBioBank and TNGB (Telethon Network of Genetic Biobanks) are associated partners of RD-Connect, where they have contributed the establishment of data models and workflows. In addition, means to standardize biosample and data sharing procedures onethical and legal grounds has been carefully considered within RD-Connect with dialogues from patient associations and international bodies. Biobanks that participate in the RD-Connect catalogue will become a part of a dynamic community that seeks to bring advancements in rare disease research.