thesis

Analysis of financial and technical feasibilty of a clinicians generated data platform of fybromyalgia syndrome patients

Abstract

This master thesis analyzes the technical and economical feasibility for a medical database, based on clinically generated data of patients with the fibromyalgia syndrome. The main idea is to collect patient data on a regular basis during standard visiting hours at their doctor. Therefore it is essential to provide a data collection platform that can be simply used by the patient and doctor. The collected information (no personal data) shall be shared between researchers to enhance collaborative studies, make studies with rare diseases possible as well as to reduce the cost and effort to gather a big enough cohort group for the study. There are already several medical databases in place that collect and share patient information for research. Yet, despite the significant socioeconomic impact of fibromyalgia, no large database about this disease exists. An introduction to the fibromyalgia syndrome and its impact on society are given. Furthermore medical database technologies and medical database projects for other diseases are described. The presented technologies are further analyzed for their usefulness of creating a database to collect information about fibromyalgia syndrome patients and to use it to enhance its research. Additionally the legal requirements for maintaining such a platform as well as the potential cost are examined. Two possible business models to provide such a platform with funding are presented. Last but not least a possible use case for the collection of patient data via a survey created with REDCap and the integration process into i2b2 has been created and possible suggestions for improvements in the future have been made to bring the platform to a release ready state

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