User-Centered Design of a National Medical Registry for Tick-Borne Diseases

Tick-borne diseases are increasing in a global perspective, with Lyme disease and tick-borne encephalitis as the most frequent. The Norwegian National Ad-visory Unit on Tick-borne Diseases is preparing the development of a national medical registry for clinical follow-up of patients with tick-borne diseases based on the best practice guidelines and for research purposes. This paper presents the methodological approach of a user-centered design process applied in the in-itial phase of the registry development. A user workshop identified user needs, requirements and proposed a service workflow for the registry operation. As the next step, a simulation of the proposed service workflow was performed in a clinical laboratory together with end-user groups. The main contribution of this paper lies on the methodological descriptions of the user-centered design pro-cess, and how to facilitate the active contribution of end-users in a technical de-velopment process within a health care context.User-Centered Design of a National Medical Registry for Tick-Borne DiseasesacceptedVersionNivå

A “Candidate-Interactome” Aggregate Analysis of Genome-Wide Association Data in Multiple Sclerosis

Though difficult, the study of gene-environment interactions in multifactorial diseases is crucial for interpreting the relevance of non-heritable factors and prevents from overlooking genetic associations with small but measurable effects. We propose a "candidate interactome" (i.e. a group of genes whose products are known to physically interact with environmental factors that may be relevant for disease pathogenesis) analysis of genome-wide association data in multiple sclerosis. We looked for statistical enrichment of associations among interactomes that, at the current state of knowledge, may be representative of gene-environment interactions of potential, uncertain or unlikely relevance for multiple sclerosis pathogenesis: Epstein-Barr virus, human immunodeficiency virus, hepatitis B virus, hepatitis C virus, cytomegalovirus, HHV8-Kaposi sarcoma, H1N1-influenza, JC virus, human innate immunity interactome for type I interferon, autoimmune regulator, vitamin D receptor, aryl hydrocarbon receptor and a panel of proteins targeted by 70 innate immune-modulating viral open reading frames from 30 viral species. Interactomes were either obtained from the literature or were manually curated. The P values of all single nucleotide polymorphism mapping to a given interactome were obtained from the last genome-wide association study of the International Multiple Sclerosis Genetics Consortium & the Wellcome Trust Case Control Consortium, 2. The interaction between genotype and Epstein Barr virus emerges as relevant for multiple sclerosis etiology. However, in line with recent data on the coexistence of common and unique strategies used by viruses to perturb the human molecular system, also other viruses have a similar potential, though probably less relevant in epidemiological terms

User-Centered Design of a National Medical Registry for Tick-Borne Diseases

Tick-borne diseases are increasing in a global perspective, with Lyme disease and tick-borne encephalitis as the most frequent. The Norwegian National Ad-visory Unit on Tick-borne Diseases is preparing the development of a national medical registry for clinical follow-up of patients with tick-borne diseases based on the best practice guidelines and for research purposes. This paper presents the methodological approach of a user-centered design process applied in the in-itial phase of the registry development. A user workshop identified user needs, requirements and proposed a service workflow for the registry operation. As the next step, a simulation of the proposed service workflow was performed in a clinical laboratory together with end-user groups. The main contribution of this paper lies on the methodological descriptions of the user-centered design pro-cess, and how to facilitate the active contribution of end-users in a technical de-velopment process within a health care context