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Feasibility and Findability

Exploring feasibility and finding data sources are the first steps of planning a research project.

For prospective medical research studies, it is important to know, for instance, how many patients with certain characteristics are treated in a hospital over a defined period of time. This information facilitates study design decisions including number of patients, number of sites to include, and timelines for patient recruitment. For a retrospective study, it is important to know what and where data(sets) e.g. from hospitals, cohorts or research projects exists that is potentially useable for research.

To promote both feasibility analysis and findability of data according to the FAIR principles, SPHN is working on the following projects, which will facilitate multi-site collaborations in Switzerland:

SPHN Metadata Catalog

SPHN Metadata Catalog provides researchers with a user-friendly metadata catalog for exploring and interactively visualizing project-specific datasets. The SPHN Metadata Catalog is designed for both human and machine readability and consists of two components: the FAIR Data Point and Schema Scope. This ensures that data is easily accessible and interpretable for a wide range of users, from researchers manually navigating data schemas to automated tools discovering and processing catalog-specific metadata. Built upon the FAIR data point specification and by adhering to the DCAT vocabulary, this tool enhances the FAIRness of SPHN metadata and promotes interoperability with other (inter)national metadata catalogs.

Swiss Cohort Consortia @Maelstrom catalogue

The Swiss Cohort Consortia is a network of Swiss cohorts available on the internationally renowned Maelstrom metadata catalogue.

The Maelstrom catalogue relies on a powerful cataloguing toolkit to improve the findability and usability of cohort data. It already serves the metadata dissemination needs of more than 450 cohorts/studies across the world, which are grouped into several international networks. Maelstrom provides a user-friendly web-based solution for data discovery, including searchable information about socio-demographic, clinical data, lifestyle and behaviours, personality and psychological measure, and much more.

The Swiss Cohort Consortium contains the following 11 cohorts:

Cohorte Lausannoise and its psychiatric arm (CoLaus|PsyCoLaus)
Swiss Ageing Citizen Reference (SACR)
Swiss HIV Cohort Study (SHCS)
Swiss Kidney Project on Genes in Hypertension (SKIPOGH)
Swiss Transplant Cohort Study (STCS)
Lausanne Cohort 65+ (Lc65+)
Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS)
Swiss Systemic lupus erythematosus Cohort Study (SSCS)
Swiss Clinical Quality Management in Rheumatic Diseases (SCQM)
Swiss Multiple Sclerosis Cohort (SMSC)
Swiss Health Study - Pilot Phase (SHeS-PP)

Interested in adding your cohort to the SPHN Cohort Consortium Network on Maelstrom? E-mail us!

SPHN Federated Query System

The aim of the query system was to allow researchers to assess, whether and where patients or patient data potentially suitable for a specific research question exists at Swiss University Hospitals (UHs).

The SPHN Federated Query System allowed queries on anonymized and nationally harmonized data coded in national or international terminologies. The system enabled researchers to verify the feasibility of their project by running simple queries against a subset of clinical data of all UHs, and it allowed the design and optimization of inclusion and exclusion criteria for study protocols without transferring any patient data. These queries may include demographic information (age and gender), diagnosis (ICD-10), procedures (CHOP), medication (ATC) and lab results (LOINC and UCUM). Overall, the system includes 700 Mio data points from 700'000 patients, who signed the general consent.

The service was discontinued by 1.12.2024. The new SPHN Data Exploration and Analysis System will allow researchers to not only assess feasibility of a research project but also to perform basic explorations on the data.