This project, FUTURE-VASC, aims to share knowledge from a research study called FAIRVASC, so that more people can benefit beyond the life of the original award. FAIRVASC has united scientists, clinicians and patients across Europe in a common goal of linking together data from several vasculitis registries (databases) to create one large European dataset. Since vasculitis is a relatively rare disease, having more information available to analyse from a larger number of patients will allow researchers to answer more questions about this debilitating illness, like predicting how the disease may progress, what are the best medications to use and identifying future health risks.
FUTURE-VASC aims to create a sustainability plan to ensure future operation of FAIRVASC, so it may continue to enhance research into vasculitis.
This will be achieved by
- setting up a management committee to oversee the project,
- creating informational materials and talks to summarise the FAIRVASC project for lay audiences, and
- writing a formal business plan.
The management committee will be patient-led and established from volunteer members; it is critical to facilitating future running of this project. This committee will take responsibility for ensuring data security, integrity and access, link in new registries, oversee financial management and ensure the project is aligning with EU data policies. The committee will work with Trinity Research and Innovation to develop a financial model to ensure future operation and potential expansion of the registry collective.
Posters and infographics will be created, and talks held, to raise awareness of FAIRVASC, to show what has been achieved so far. These materials will be aimed at patients or members of the public wishing to learn more about vasculitis research, at potential research and industry collaborators, and those looking to create their own rare disease registries.
- Award Date
- 12 September 2022
- Award Value
- Principal Investigator
- Professor Mark Little
- Host Institution
- Trinity College Dublin
- Knowledge Translation Awards