About the project
COFFI Health Registry is related to the international COFFI-Consortium (Collaborative on Fatigue Following Infection).
The registry contains data from a total of 17 observational prospective post-infective cohort studies encompassing about 24,000 individuals.
Professor Vegard Bruun Bratholm Wyller is principal manager of the COFFI Health Registry. Akershus University Hospital is the hosting institution, whereas the Services for sensitive data (TSD) at the University of Oslo is providing the necessary IT infrastructure
Objectives
The overarching aim of the COFFI Health Registry is to unravel the underlying causes and mechanisms of fatigue and other late effects following acute infections.
Pooling of data from several single cohort studies strongly increases the statistical power and enables more sound conclusions.
Method
Data from the cohort studies will be exported to a protected storage area within the TSD infrastructure.
A novel, registry-specific ID will be assigned to the participants of each study, but no information that enables direct identification - such as names - will be stored in the registry.
Data will be harmonized by statistical procedures that enable merging of data even when they initially were acquired by slightly different methodologies/inventories.
Thereafter, merged data sets from the COFFI Health Registry will be made available for research projects led by a COFFI affiliated researcher and upon formal application to the COFFI Steering Committee.
Research projects will utilize completely anonymous data where the registry specific ID has been removed, thereby ensuring a high level of data protection in line with the GDPR regulation.
Cooperation
- Professor Andrew Lloyd, Kirby Institute, University of New South Wales, Australia
- Professor Guri Rørtveit, University of Bergen, Norway
- Professor Knut Stavem, Akershus University Hospital and University of Oslo, Norway
- Dr. Knut-Arne Wensaas, NORCE Norwegian Research Centre, Bergen, Norway
- Professor Hans Knoop, University of Amsterdam, The Netherlands.
- Professor Maria Prins, University of Amsterdam, The Netherlands.
- Dr. Kees van den Wijngaard, National Institute for Public Health and the Environment, Amsterdam, The Netherlands.
- Dr. Rachael Evans, University of Leicester, UK
- Professor Patrick Gérardin, Centre Hospitalier Universitaire de la Réunion, France
- Professor Dedra Buchwald, Washington State University, USA
- Dr. Ellen van Jaarsveld, Radboud Institute for Health Sciences, The Netherlands
- Dr. Stephan Keijmel, Eurofins PAMM, The Netherlands.