Take it to the Bank.

In this issue of the Journal of Cystic Fibrosis, Beekman and colleagues report on discussions surrounding the establishment of European CF specimen biobanks for research use, which is complimented by a short communication by Garratt and the AREST CF research team [1,2]. These articles highlight the challenges and considerations of developing a multi-country CF biobank (the former), but also highlight the experience of managing a large biobank and the research advancements that a robust and well-conceived bank can enable (the latter). Research funding is often predicated on providing clear data sharing plans and greater access to research data and specimens [3,4]. With this push, biobanking should move from single investigator collections that are hoarded in personal freezers to more centralized collections available to the larger research community [5]. There are a number of key variables that need to be considered when developing and managing a specimen biobank, including the types of specimens obtained, standard operating procedures (SOPs) surrounding all steps (for the specimen) from the patient to the bank and ultimately the researcher (e.g.: sample acquisition, processing, handling, storage, transport, labeling, tracking, logging), ownership of specimens, processes for access to samples, systems to ensure quality of samples and accompanying information, location and management of the biorepository (e.g.: academic center, non-profit or for-profit storage facility), regulatory auditing, monitoring and ultimately the protection of patient health information. These considerations are certainly compounded in the context of a CF biobank with multiple contributing countries (and each with their accompanying regulations). However, establishing this type of multi-cultural and multi-ethnic biobank should be highly encouraged, particularly if the CF research community seeks to develop therapies and treatment approaches that allow all CF patients to live long, productive and fulfilled lives. The multi-cultural nature of a European CF biobank has great potential to shed light on cultural, environmental and societal impacts on patient outcomes, particularly since ~50% of disease heterogeneity is due to genetic influences and 50% is not [6]. Furthermore, as new therapies continue to enter care, banking of biospecimens is critical to maintain a ‘therapeutically relevant’ biobank that includes specimens from CF subjects with a variety of phenotypes and receiving a variety of therapies [7].