New Zealand has taken a huge step in putting people with MS at the centre of global research by introducing MSBase, the country’s first MS patient registry.
MS registries put people with MS at the heart of research, enabling them to shape and improve the diagnosis and treatment of those living with the condition.
Professor Helmut Butzkueven, Managing Director of MSBase – an online global MS registry – officially launched the New Zealand registry at an event hosted by the New Zealand Multiple Sclerosis Research Trust in May.
Prof. Butzkueven spoke on behalf of Multiple Sclerosis New Zealand at three advocacy meetings on the importance of preserving brain health and the need to provide access disease modifying drugs (DMTs) earlier than is currently possible under New Zealand’s specific criteria.
MSBase is an observational MS database open to all practising neurologists and their teams, worldwide. With the consent of participants, MSBase enables people with MS to participate in global collaborative research using non-identifiable data that would otherwise be difficult to achieve. This ‘real world’ data encourages global research and observational studies. In total, MSBase now contains the anonymised data of over 60,000 people with MS from 33 countries.
The introduction of MSBase in New Zealand resulted from recommendations in a report that contained the outcomes of the Trust’s foundation project, ‘A Feasibility Study on the Introduction of a National MS Patient Registry’.
Since the completion of the feasibility study, the Trust has been working to establish two pilot sites in Canterbury and Waikato. Professor Butzkueven officially launched the two pilot sites, expressing his excitement that New Zealand was now joining this important MS database.
Doug Haines, Chairman of the Trust, said, ‘Since the Trust’s initiation our primary focus has been to establish a national database of all people with MS in New Zealand.’
‘We are proud to be leading the way and look forward to New Zealand playing its part on the global stage, participating in life improving research and improving our understanding of research needs and outcomes through real world data.’
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