Adopting open-science infrastructure in the ENIGMA-Parkinson’s Disease consortium: A case study

The adoption of open science principles for data has been instrumental in enabling the creation and reuse of large datasets and efficient collaboration, but requires a dedicated open data sharing infrastructure. Although clinical neuroscience research increasingly involves large-scale collaboration on controlled, sensitive data, open science principles can bring key benefits in this setting. The unique privacy and access requirements of clinical research create challenges that require a specialized data infrastructure, focused on local governance. Here we present a narrative account of a pilot project to establish such an infrastructure for the data of the ENIGMA Parkinson’s Disease working group by adopting the decentralized Nipoppy and Neurobagel tool stack. Our collaboration has led to the adoption of community data standards among international sites of the working group and has launched an open portal that enables the cross-site discovery of cohorts based on harmonized metadata. We discuss our approach to this collaboration, the social and technical challenges we have encountered and how we addressed them in the hope that groups in similar situations may benefit from our experiences.