The
Challenge
.

To improve treatment and one day find a cure for Multiple Sclerosis (MS), the not-for-profit MSBase Foundation created the MSBase Registry (MSBase) – an international online registry that facilitates the collection, tracking, sharing and evaluation of real-world MS patient data in specialist clinical practice – providing resources that enable long-term outcomes research to inform and improve patient care.

Recognising MSBase was hampered by technical and usability limitations, including the use of third-party data entry software (DES), the Foundation engaged Kiandra to redevelop both MSBase and DES, to create a seamlessly integrated technology stack.

The
Solution
.

Kiandra architected, developed and delivered a full end-to-end, Microsoft technology-stack web-based research registry application to replace the old MSBase. Launched in 2017, the new solution incorporates a number of improvements and usability enhancements, which resolve the limitations experienced by the Foundation:

It now accepts multiple inputs and leverages the Internet of Things (IoT) to interface with multiple devices such as MRI machines

•    It provides the Foundation control over the direction of the product
•    It allows the end user to search, report and visualise data
•    It's easily customised to respond to new sub-studies
•    It provides an environment where information sharing and synchronisation is encouraged
•    It's repeatable and can be readily adopted in virtually any research and data capture scenario globally.

The
Outcome
.

The significance of 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.

This project has has also led to generous grants in support from Foundation sponsors and new ongoing funded projects into MS research, which will ultimately lead to much better outcomes for patients.

Runner-up in the CRN Impact Awards for Digital Innovation.

HELMUT BUTZKUEVEN
Managing Director & MS Neurologist, MSBase Foundation
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...

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to help.

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