Program
10:00 - Coffee and mingling
10:15 - Welcome and introduction
10:20 - 11:05 Data Manager’s Perspective by Oda van Jole, a data manager and research coordinator at the PROMENTA research center and DRIVE research groups
11:05 - 11:15 Break and mingling
11:15 - 12:00 Researcher’s Perspective by Dr. Ziada Ayorech, a postdoctoral research fellow in psychiatric genetics at the PROMENTA research group
About this session
From a Data Manager’s Perspective
Norwegian registry data – from health registries and Statistics Norway to large cohort studies like MoBa – offer unique possibilities for population-level research and for enriching your own study participants’ data with long-term, routinely collected information. At the same time, many experience the path from idea to dataset as intimidating, slow, and complex.
Most registries want their data to be used to their full potential, while operating under strict privacy and ethical requirements. This creates a landscape of approval bodies, application systems and linkage procedures, involving for example REK, Sikt, Helsedataservice and Statistics Norway, that can be difficult to navigate for newcomers.
In this talk, I share my experience as a data manager working with these aspects of registry data. I will walk through practical steps and key considerations from applications and linkage to how to handle the data when it finally arrives: quality control, corrections, and secure handling, protecting data integrity and supporting robust findings. The aim of this talk is to demystify the processes and help you unlock Norwegian registry data.
Oda van Jole is a data manager and research coordinator at the Department of Psychology, University of Oslo, with a background in cognitive neuroscience and psychology. Operating at the intersection of researchers, data owners, and ethical/legal requirements, Oda has valuable experience navigating Norwegian registry systems and approval bodies. She works primarily with sensitive health and registry data, managing the full data life cycle in research projects – from planning, collection and application to GDPR-compliant linkage, secure storage, access management, sharing, and eventual deletion or anonymisation.
From a Researcher’s Perspective
Norwegian registry data let us ask ambitious questions about mental health and development at the population level. But there is a large, often invisible gap between “data delivered” and “analysis run” that quietly shapes everything we publish.
Many of us are trained in advanced models and complex statistics. Far fewer have formal training in what it takes to prepare registry data at scale: decoding administrative codes, harmonising measures over years, and turning raw entries into variables that different teams can meaningfully compare.
In psychology and related fields, we talk about a replication crisis driven by analytic flexibility. In big registry projects, similar flexibility appears earlier—at the level of variable creation. If we are all using the same datasets, but defining key exposures and outcomes differently, we build hidden noise into our starting point. This is especially relevant as more international researchers work on Norwegian data while learning Norwegian systems.
In this talk, I will discuss what it is like to navigate these datasets as a researcher, and why shared pipelines, clear documentation and close collaboration with data managers are essential if we want big data findings that are not just significant, but actually reliable and useful.
Dr Ziada Ayorech is a Ugandan born psychiatric geneticist and mental health researcher, raised in Canada, trained in the UK and now based in Norway. Her work uses large scale registry and cohort data to examine how genetic, familial and structural factors shape psychiatric risk across the life course. Having led and collaborated on international projects using Norwegian registries, UK Biobank and other population datasets, she brings practical experience of working across systems, disciplines and countries. Alongside her methods work, she is an experienced lecturer and science communicator, delivering invited talks and advising on ethical, accessible dissemination of genetic research.
About the data managers network meetings
UiO Data Managers Network is an informal network for research data managers affiliated with the University of Oslo. The network aims to enable information exchange, initiate action, and create new interdisciplinary collaborations through sharing of cases and examples of data management practices.
The UiO Data Managers Network organizes regular meetings for the members and open to others who are interested where different topics related to data management practices are addressed.
Learn more on how to join the UiO Data Managers Network
Do you have a suggestion for future meetings or activities in the network? Send us your suggestions!