About us
The Data Dictionary was built by people who ran into the problem it solves.
The Maastricht Study is one of World's most extensively phenotyped population cohort studies, with over 8,000 variables collected across more than 10,000 participants. Like most large research cohorts, it received a steady flow of data requests from external researchers, and for a long time, managed those requests the way most studies do: through email, Word documents, and a lot of back-and-forth.
At some point it became clear that this was not a process problem that could be fixed with a better template. What was missing was a proper system: something that made the study's variables findable without requiring researchers to contact anyone, and that structured the request process so that incoming applications arrived with the information actually needed to assess them.
The Data Dictionary was built to fill that gap. It started as an internal tool for The Maastricht Study and has since been developed into a platform that any research organization can use to manage data access properly.
Our mission
Research data collected in large studies represents years of work, significant funding, and the participation of thousands of people. Much of it goes underused, not because researchers are not interested, but because finding out what exists and how to request it is harder than it should be.The goal of the Data Dictionary is straightforward: make research data findable for the researchers who could use it, and give data holders a process that is structured, transparent, and defensible. Not every piece of data, and not without governance. But the right data, to the right researchers, through a process that works.
Built in collaboration
The platform is a collaboration between three organizations, each bringing a different part of what makes it work.
The Maastricht Study contributes the operational context. Running one of the Netherlands' largest population cohorts means managing real data access at scale. The study's experience with what goes wrong in unstructured processes, and what researchers actually need when they approach a data holder, has shaped every part of the platform.
Maastricht UMC+ provides the institutional and academic grounding. As one of the Netherlands' university medical centers and the home of The Maastricht Study, MUMC+ brings expertise in research data governance, FAIR data management, and the practical requirements of working with sensitive health data in an academic setting.
Hello Sunshine is the technical partner responsible for building and maintaining the platform. Working closely with the research teams at The Maastricht Study and MUMC+, Hello Sunshine has translated operational experience into a product that is built for how research organizations actually work.
Collaboration
This initiative is developed through a collaboration between these parties:
