Would you like to contribute your data skills to the better understanding of rare diseases and to educate yourself in FAIR data stewardship? Do you like to work in an international setting? Then, this is the job for you!
As the number of rare disease patients is small by definition, there is a pressing need for the joint analysis of patient data on natural disease history, genetic makeup, disease modifiers and treatment outcomes. However, the available data is fragmented across different care providers, registries, and countries, and cannot be used to their full potential because data get lost, are not associated with descriptive metadata, or miss essential details on the way they are produced. To fix that, the research community has adopted the FAIR principles
, worldwide. They say that data should be Findable, Accessible Interoperable, and ultimately Reusable.
We believe that the FAIR data principles should be implemented to datasets with the potential to be linked to others and to be federated and analysed. To increase the FAIRness of data in a European Rare Disease Project, we are looking for a data steward!
We took important first steps in the development of interoperable rare disease patient registries, based on the FAIR principles
, facilitating joint analysis of patient data from multiple registries. We are now looking for an enthusiastic and ambitious data steward, who will support the onboarding team in the European Rare Disease project. This includes onboarding to the virtual platform different rare disease data, such as clinician and patient-reported outcomes and health questionnaire data in other use cases. This will unlock the data for use in clinical patient management, research and improvement in quality of care.
You will develop data models and tools to capture FAIR data at the source (i.e. where the data are generated or analysed) and facilitate the publication of research data in FAIR Data Points and registries. A specific focus will be on the joint analysis of data from clinical registries and patient-reported outcomes. You will work in the context of EJPRD and be in close contact with the data stewards on other projects (Health-RI, Healthy data, X-Omics) and in other regional nodes with highly similar goals.
You become the expert in the field of data management and interoperability for scientific research and act as a point of contact for several resources that want to get connected to the European Virtual Platform for Rare Disease Resources. Tasks and responsibilities
- Collaborate with Rare Disease European Reference Networks (ERNs), FAIRification stewards, and European registry initiatives to ensure FAIR data principles adherence.
- Receive formal training on FAIR principles through tutorials and mentoring by colleague data stewards.
- Establish connections with existing ERN registries and the Rare Diseases Platform.
- Participate in and report on FAIR data stewardship developments to the EJPRD onboarding team.
- Represent the onboarding team at events related to Rare Diseases registries.
- Report progress on onboarding and FAIRification of registry projects to leadership.
- Familiarize with data management, including drafting data validation and management plans.
- Develop shared work processes and standards for FAIR data.
- Raise awareness at national, regional, domain, and local levels about the importance of FAIR data.
- Engage with clinicians and researchers, providing support and training in FAIR data management.
- Co-develop software, tools, services, SOPs, and policies for FAIR data capture and publication.
- Participate in (inter)national data stewardship discussion groups and initiatives.