General Information

Real World Clinical Data

Real-world clinical data is needed to understand the course of disease, assess clinical effectiveness of medicines and to remain alert to unexpected serious adverse events or frequencies of adverse events (see A. Gafson et al. Multiple Sclerosis Journal 23 (2017) 362-369, https://spiral.imperial.ac.uk:8443/handle/10044/1/44898). The Optimise MS Project Team, which has involved neurologists from several UK centres, was created to address this need for multiple sclerosis (MS) care.

Addressing the Need for Prospective Pharmacovigilance Monitoring with DMT Use

The primary objective of the Optimise MS Team has been to encourage MS neurologists to record comprehensive, standardised data on their patients. This will enable sharing of anonymised data with other clinicians and researchers to answer questions important for improving patient care and health outcomes. The Optimise MS Team has focused particularly on collecting data to assist in monitoring of benefits and risks of disease modifying therapies for prospective pharmacovigilance monitoring.

Optimise MS Clinical Research Data Management Software

While software tools for MS patient data entry and curation have been generated before, none are in wide-enough use. One major challenge is to balance comprehensiveness of data collection with the sustainability of data entry in a busy clinic environment. Another is to ensure compliance with basic requirements for data security and auditing and the ability to remove data if consent is withdrawn.

The Optimise MS Team has worked with a core group of MS neurologists and solicited views of patients, industry and regulators regarding the kinds of data that are needed to make clinical decisions, to meet needs for prospective pharmacovigilance and that are practical to acquire. The Team explored ways of making them easier to record. Optimise MS software developers then implemented these user requirements as the software downloadable here. This tool now is freely available for use by clinicians for MS care research.

The tool is provided “as is” as open access code under the terms of an MIT License (Open Source Initiative). The open access software provides users with a secure path to “future proofing” the software by giving control to them.

The Optimise MS software will generate .json output files. Users are encouraged to share anonymized data with larger registry efforts, such as MSBase ( https://www.msbase.org/) or the UK MS Register (for UK based clinicians, https://www.ukmsregister.org/Portal/Home).

Additional updates to the tool will be provided periodically. In registering as part of approval for the software download, the Optimise MS team will receive your approval to hold your contact details to allow us to update you as the software is enhanced. Feedback regarding the software is welcome. Please leave your comments at the Optimise MS Feedback Space- sign in, click on New Issue, add title and description and then submit your feedback. However, note that users need to register for a (free) GitHub account to access the Feedback Space.

Other Tools for Real World Data Collection

The Optimise MS Team also is working to develop other tools for real world data collection for MS care. A recent report describes personalised, continuous, quantitative gait speed analysis in the home environment using a simple, low cost accelerometer ( https://www.frontiersin.org/articles/10.3389/fneur.2018.00561/full). Software and sample data for researchers who wish to explore this area is available ( https://github.com/akaraspt/ms-gait-calibrate).

Getting Started

Optimise MS is accessible in multiple forms: direct access to our demo servers, packaged Docker containers and desktop application.

Accessing our demo server

To access our demo server, simply head here. Confidential patient information should NOT be entered while using the demo server. No data that will need to be accessed in the future should be entered. The Demo is intended to illustrate how the software works, not to provide a tool to support clinical data storage.

Running the Docker image

If you are an IT professional and would rather deploy the application on premise you can get this done in four simple steps.

1. Install Docker version 18.x.y-ce or above.
   Instructions available here.
   
   
2. Finally, run this simple command in a privileged shell
   curl -s https://optimise-ms.org/install | bash :
   
   
3. You are done!
   
   

Installing the desktop application

If you have tighter security requirement and want to avoid data accessible over network socket, why not install Optimise MS as a Desktop application? You can find all the package on out public repository at https://github.com/dsi-icl/optimise/releases/latest/

Release note

Optimise MS is finally starting its journey to help you collect data for MS patients.

Creation of the Optimise MS Database tool was sponsored by Imperial College London and generously funded by Biogen. This project also has been supported by the Imperial College NIHR Biomedical Research Centre Brain Sciences Theme. The core Optimise MS Team exercising oversight over the software development project included Ruth Dobson (St George’s Hospital), Matt Craner (University of Oxford & Frimley Health Foundation Trust), James Overell (University of Glasgow), Gavin Giovannoni (Barts and The London Hospitals), Cheryl Hemingway (Great Ormond Street Hospital), Yi-ke Guo (Imperial College Data Science Institute) and Paul Matthews (Imperial College London NIHR Biomedical Research Centre and Division of Brain Sciences, Department of Medicine). Developers on the project included Chon Sou, Pierre-Marie Danieu, Eleni Pissaridou and Florian Guitton (Imperial College Data Science Institute). All of the team have benefited from the input of many clinicians and patients with MS.

Browser and device support

Optimise MS is built to work best in the latest desktop and mobile browsers, meaning older browsers might display differently certain components or not render a functional application at all.

Our testing relies on the fantastic support of BrowserStack for open source

Supported browsers

Specifically, we support the latest versions of the below metioned browsers and platforms.

Alternative browsers which use the latest version of WebKit, Blink, or Gecko, whether directly or via the platform's web view API, are not explicitly supported. However, Optimise MS should (in most cases) display and function correctly in these browsers as well. More specific support information is provided below.

Desktop browsers

Similarly, the latest versions of most desktop browsers are supported.

For Firefox, in addition to the latest normal stable release, we also support the latest Extended Support Release (ESR) version of Firefox.

Unofficially, Optimise MS should look and behave well enough in Chromium and Chrome for Linux, Firefox for Linux, and Internet Explorer 11, as well as Microsoft Edge, though they are not officially supported.

Mobile devices

There is currently limited to no support for mobile devices.

License FAQs

Optimise MS is released under the MIT license and is copyright 2024 Imperial College London. Boiled down to smaller chunks, it can be described with the following conditions.

It requires you to:

• Keep the license and copyright notice included in Optimise MS's CSS and JavaScript files when you use them in your works

It permits you to:

• Freely download and use Optimise MS, in whole or in part, for personal, private, company internal, or commercial purposes
• Use Optimise MS in packages or distributions that you create
• Modify the source code
• Grant a sublicense to modify and distribute Optimise MS to third parties not included in the license

It forbids you to:

• Hold the authors and license owners liable for damages as Optimise MS is provided without warranty
• Hold the creators or copyright holders of Optimise MS liable
• Redistribute any piece of Optimise MS without proper attribution

It does not require you to:

• Include the source of Optimise MS itself, or of any modifications you may have made to it, in any redistribution you may assemble
• Submit changes that you make to Optimise MS back to the Optimise MS project (though such feedback is encouraged)

The full Optimise MS license is located in the project repository for more information.