UK MS Trials and Registries Group - MS Cutting Edge ScienceEvent reports
UK MS Trials and Registries Group keeps professionals plugged into the world of research so they can pool their data, share their expertise, and avoid the duplication of efforts.
The group, for people involved in data collection and research including registries and trials, aims to join the dots between the various silos of information being collected around the country so that it can be used more effectively,
Dr Emma Tallantyre
This, she added, had resulted in greater power to address questions, provided researchers with peer review and support, and helped them to align their efforts.
Since its inception in 2020, the network has peer reviewed around 12 research proposals, several of which are now “well on their way to being multi-centre projects,” said Emma.
The network has already led to a number of publications, and members have worked on draft guidance documents, including one on the management of progressive MS.
The group, which has been meeting online twice a year, is also building a mentoring scheme, said Emma. “Some neurology trainees have an interest in neuroinflammation, but they are lacking a pathway. (The scheme) has been able to give them a mentor and make sure hey are getting all the opportunities they can,” said Emma.
One of the biggest achievements of the network so far has been instigating multicentre, data pooling projects, she went on. “That’s been really helpful in navigating some of the issues that have hindered us in the past,” said Emma, pointing to the limited usefulness of siloed datasets for addressing future research questions.
Ongoing projects include studies on disease modifying therapy (DMT) durability, MS misdiagnosis, DMT monitoring, and a COVID and MS audit.
Looking ahead, the group’s goals over the next year include looking at greater data harmonisation, including the development of a minimum dataset, and agreeing on a process for obtaining approval for nation-wide data sharing.
They also want to look at the possibility of facilitating real-world data fellowships and exchange programmes.
This activity has been supported by sponsorship from Roche Products Ltd, Biogen Idec Ltd and Janssen-Cilag Ltd. The sponsors have had no control over the educational content of this activity.
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