SwissRDL - Medical Registries and Data Linkage

Expertise

With a long history and experience dealing with medical registries and observational studies, the core competences of SwissRDL are:

Develop and design of medical registries on the SwissRDL Registry System
Literature review, proposal of documentation content, moderation of consensus processes, advice and support during the drafting and design of case report forms and the logistics of data collection, validation rules
Programming / implementation of registers online and / or in paper forms in one or many languages with the attention to the existence of validated translations for patients based instruments
Warranty of data protection policies in medical registries that are necessary for the operation of registries, if necessary clarification and clearance from the responsible authorities. (e.g. successful data protection approvals in France and Germany, clearance).
Programming from the web-service for an automatized data import from hospital internal documentation systems
Interface for implants documentation with a rich database of implants catalogs. Thanks to a barcode interface, implants can easily be scanned and added to the operation forms.
Additionally, offering studies and projects on REDCap

Training and support of the registry participants at the begin and in the course (professionally [1st level] and technically [2nd level])

Data analysis with medically and methodologically important aspects including risk adjustment
Outcome research, with regard to post-market performance of implants or comparative effectiveness research of therapies with an increasing tendency of using similar databases for cross-validation studies or for finding comparators.
Reporting from simple inventory reports (key documentation figures) over the annual reports to complex scientific benchmarking reports (to the cantons, professional associations, hospitals, participants, industry, etc.)
Annotated and prose-reports or publications in peer-reviewed journals.

The flexible IT infrastructure and a competent and experienced IT group allow for further development of the SwissRDL Registry System to address specific requirements including new application tools and documentation workflows

Know-how and experience in the field of validation of registry data, including development of a validation concept, generation of randomized sampling, remote and on-site monitoring and reporting.

Probabilistic or deterministic data linkage between registry data and other databases unencrypted or using an intermediate key without identification of the patient