The aim of this working group is to provide methodological and operational guidance for ERN-wide biobanking projects. This will be achieved by developing guidelines to enhance systematic bio sampling for rare diseases projects conducted within and between ERN centres.
As you may know, some initiatives such as Orphanet started to catalogue the regional, national and European rare diseases biobanks existing across Europe. However, existing inventories of rare diseases biobanks are typically scarce and incomplete. In order to obtain a better picture, we prepared the survey below to collect preliminary data on the existence of biobanks, the purpose and the type of samples they collect within the ERNs Health Care Providers. This will provide a first overview of existing resources for biobanking within ERNs and will help gaining further insights on their use in the rare diseases field.
The survey should not take you more than 3 minutes to complete. We thank you for your time.