As an international online registry for neurologists studying multiple sclerosis and other neuro-immunological diseases, the MSBase Registry contains more than 58,000 patient records with 440 members from 33 countries. Administered by the MSBase Foundation, it is the largest organised repository of longitudinal, 'real-world' MS patient data.
But in order continue to facilitate medical break-throughs and innovate, the foundation needed to address a number of technical and usability limitations with MSBase.
So it turned to Kiandra IT for help. Kiandra architected, developed and delivered a full end-to-end web-based research registry based on Microsoft technology to replace the old MSBase.
The decision to use Microsoft technology dramatically accelerated the pace of development and allowed for a rapid launch of MSBase and ease of transition for both the MSBase members and MSBase Operations Team.
An MSBase Foundation representative was embedded into the Kiandra team to enable very tight communication, drastically improving the time to make project-critical decisions. This meant the Kiandra team was able to dramatically accelerate the pace of development — shortening the client feedback loop and increasing business value with every iteration.
Together, these decisions ensured Kiandra was able to facilitate the changes in requirements and scope and successfully deliver the new MSBase.
Launched in 2017, the new solution incorporates several improvements and usability enhancements, which resolve the limitations experienced by the foundation.
These include accepting multiple inputs, making it possible to participate in the Internet of Things. End users can now search, report and visualise data, and it is easily customised to respond to new sub-studies. The new solution is also repeatable and can be readily adopted in virtually any research and data capture scenario globally.
The new MSBase means the foundation is now involved in a world-first endeavour, where volumetric MRI metrics are integrated directly into MSBase using IoT. This ambitious, large-scale project will use the collated MRI measures to develop a marker to predict disease progression, allowing for early detection of the disease worsening and early implementation of preventative measures such as treatment change, which can drastically improve outcomes for people living with MS.
The global database of MS patients are now also able to participate in observational trials which are activated through an innovative sub-studies platform. In each study, selected sets of disease characteristics are mapped prospectively, allowing investigators to perform research analyses, and for pharmaceutical companies to map the medium and long-term effects and safety of their products.
Data collection accuracy has improved, and synchronisation issues have been eradicated, while data analytics and visualisation now enabling much better practitioner-driven insights. New studies and innovative ideas are rapidly facilitated by powerful customisation, and the solution can be applied to virtually any research and data capture scenario globally.
According to Helmut Butzkueven, MSBase Foundation managing director and MS neurologist, “In collaboration with the MSBase Foundation, Kiandra IT has developed an outstanding Multiple Sclerosis monitoring and research system which will allow clinicians and people with MS to optimise management, research outcomes, and integrate data from many sources including patient self-monitoring applications and advanced image analysis tools to allow best monitoring and best care to be delivered.
"The application will also support live research to ensure we get the best long-term outcomes for people with MS and stop the disease for as many people as possible.”
It has also paved the way for smooth delivery of phase two of the project – the redeveloped Data Entry System. This desktop-based application is undergoing final testing and will be released in early 2018 to complement MSBase.
Kiandra IT is a finalist in the 'Digital Transformation' category in the 2018 CRN Impact Awards. For a list of all finalists and further details on the awards, please head to the CRN Impact Awards hub. The awards take place during the CRN Pipeline conference. You can get more information and purchase tickets here.