Alberto Cámara Ballesteros’s research while affiliated with Instituto Nacional de Investigación y Tecnología Agraria y Alimentaria and other places

A key source of biodiversity preservation is in the ex situ storage of seed in what are known as germplasm banks (GBs). Unfortunately, wild species germplasm bank databases, often maintained by resource-limited botanical gardens, are highly disparate and capture information about their collections in a wide range of underlying data formats, storage platforms, following different standards, and with varying degrees of data accessibility. Thus, it is extremely difficult to build conservation strategies for wild species via integrating data from these GBs. Here, we envisage that the application of the FAIR Principles to wild species and crop wild relatives information, through the creation of a federated network of FAIR GB databases, would greatly facilitate cross-resource discovery and exploration, thus assisting with the design of more efficient conservation strategies for wild species, and bringing more attention to these key data providers.

Since 2014, “Bring Your Own Data” workshops (BYODs) have been organised to inform people about the process and benefits of making resources Findable, Accessible, Interoperable, and Reusable (FAIR, and the FAIRification process). The BYOD workshops’ content and format differ depending on their goal, context, and the background and needs of participants. Data-focused BYODs educate domain experts on how to make their data FAIR to find new answers to research questions. Management-focused BYODs promote the benefits of making data FAIR and instruct project managers and policy-makers on the characteristics of FAIRification projects. Software-focused BYODs gather software developers and experts on FAIR to implement or improve software resources that are used to support FAIRification. Overall, these BYODs intend to foster collaboration between different types of stakeholders involved in data management, curation, and reuse (e.g. domain experts, trainers, developers, data owners, data analysts, FAIR experts). The BYODs also serve as an opportunity to learn what kind of support for FAIRification is needed from different communities and to develop teaching materials based on practical examples and experience. In this paper, we detail the three different structures of the BYODs and describe examples of early BYODs related to plant breeding data, and rare disease registries and biobanks, which have shaped the structure of the workshops. We discuss the latest insights into making BYODs more productive by leveraging our almost ten years of training experience in these workshops, including successes and encountered challenges. Finally, we examine how the participants’ feedback has motivated the research on FAIR, including the development of workflows and software.

Objective: This paper reports on the development of a dynamic data management planning questionnaire to guide data stewards of the European Reference Network (ERN) rare disease patient registries to make their data findable, accessible, interoperable, and reusable (FAIR). As part of this work, the questionnaire was validated through expert review and aligned with existing resources on rare diseases and FAIR data management. Materials and Methods: The questionnaire was developed for the Data Stewardship Wizard, a tool for data management planning. Knowledge sources on FAIR data, ERN patient registries, and data management were used to compose questions. Ten domain experts validated the questionnaire. The topics in the questionnaire were aligned with existing knowledge bases. Results: A total of 57 questions were included in the questionnaire. Twenty-three references to the FAIR Cookbook and Research Data Management toolkit for Life Sciences were added. Expert validation provided a total of 166 comments on content, structure, and software-related issues. A public instance of the Data Stewardship Wizard was deployed for use by data stewards of ERN patient registries. Discussion: The questionnaire addresses issues that ERNs encounter when making their registries FAIR and follows the implementation choices made by the European rare disease community. A challenging task for future research is to extend the questionnaire to other types of registries and to validate with users. Conclusion: This smart questionnaire is the first model created for the Data Stewardship Wizard that helps ERN patient registries with making their data FAIR. It will assist data stewards in aligning their efforts and providing guidance on FAIR data.