On the 25th May 2018 the New Zealand Multiple Sclerosis Research Trust along with invited guests welcomed Professor Helmut Butzkueven, the Managing Director of MSBase, to New Zealand to officially launch MSBase, New Zealand’s first MS patient registry. Professor Butzkueven was in the country to speak on behalf of Multiple Sclerosis New Zealand at three advocacy meetings regarding the importance of preserving brain health and particularly the need to access disease modifying drugs (DMTs) earlier than is currently allowed by the New Zealand specific criteria.
In October 2016 the Trust funded its foundation project, a “A Feasibility Study on the Introduction of a National MS Patient Registry”, conducted by Dr Caroline Allbon. The final report was submitted in July 2017 and concluded with the recommendation to introduce MSBase to New Zealand.
MSBase is a longitudinal, strictly observational MS database open to all practicing Neurologists and their teams, worldwide. There is now the anonymised data of over 60,000 PwMS from 33 countries in the database. In collaboration with participating Neurologists, MSBase has established a unique web-based platform dedicated to sharing, tracking and evaluating ‘real world’ data outcomes. The ability for the front-end platform iMed to interface with existing hospital records has be potential to reduce duplication for under resourced neurology departments and reduce time spent on administrative tasks.
MSBase encourages global research and observational studies using ‘real world’ data. With consent, MSBase enables people with MS to participate in global collaborative research using non-identifiable data, which would otherwise be difficult to achieve.
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 at the Auckland function expressing his excitement that New Zealand was now joining this important MS database.
“Since the Trusts 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” commented Trust Chairman Doug Haines.
As the next stage, the Trust has continued its commitment and is now funding the implementation of MS Base at the two pilot sites. The pilot teams of Dr Deborah Mason alongside Nurse Specialist Heather Brunton in Canterbury, and Dr Jan Schapel and Nurse Sophie Wills in the Waikato are now beginning the processes in their respective DHBs. Following expressions of interest, the Trust is hopeful that other DHBs will join in the near future.
Attendees also thanked departing Trust Chair Tim Preston who has successfully spearheaded the organisation since its launch in 2015. The Trustees thank Tim for his dedication to elevating the importance of MS Research and laying the groundwork for the future direction of the organisation.
The Trust continues to strive to reach its goal of raising $5 million by 2020. Vital funds will support more centres around the country to join the MSBase patient registry as well as stimulating other MS research projects in the coming years. Please consider donating to MS research and helping to improve the lives of people with MS now and in the future. Donate generously here.