Transforming data into knowledge
Many people believe that setting up and running a disease registry is simple and predictable. In our experience this is frequently not the case. There are always unexpected issues which arise which need a flexible approach. Furthermore, not all companies offering a “registry solution” actually understand our industry. Many are IT based but do not understand the nuances of medical data. We do!
We are passionate about data quality. In many instances patients are rare; therefore you need to get the best possible quality data from those enrolled in your registry. In addition, clinicians have limited time available to devote to your registry. We know this; we work in your industry. We will liaise with you and your investigators to ensure maximum data quality with minimal data queries. It all comes down to understanding the medical/clinical issue at hand and your specific requirements, then being able to design a flexible but robust system to deal with advances in clinical practice which inevitably occur through the life of the registry.
We are an independent company from you, the sponsor, which is advantageous for registries, especially if personal data are required.
The service we provide is a cost-effective state of the art web-based solution with a high quality, secure long-term patient registry, ultimately providing valuable data for health economics, drug registration or to satisfy current regulatory requirements regarding long-term observational data. Like your registry, we are here for the long term. We love epidemiology and evidence-based medicine; both require the type of long term, real-life data you are proposing to collect.