MS: Busting the Myths
June 27, 2018 | Uncategorised
On Saturday 26th May Professor Helmut Butzkueven was invited to speak at the annual MS Auckland Research Day. 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. Professor Butzkueven also discussed the role that MSBase can play in understanding real world outcomes from patient data.
His visit marked MSNZs recognition of the 2018 World MS Day and was thanks to generous funding support from the Multiple Sclerosis International Federation.
Watch Professor Butzkueven’s informative talk here (1hr and 5mins).
For more information about our current advocacy work and our recent submission to PHARMAC on improving access to currently funded disease modifying treatments (DMTs), compiled with the help of Professor Butzkueven see here.
MS Brain Health
MS Brain Health is an international group of MS experts calling for a radical change in the management of multiple sclerosis because time matters at every stage of the disease.
Brain Health: Time matters in multiple sclerosis presents consensus recommendations on diagnosis, therapeutic strategies and improving access to treatment in MS. Its core recommendation is that the goal of treating MS should be to preserve tissue in the central nervous system and maximize lifelong brain health by reducing disease activity. The report calls for major policy changes aimed at achieving the best possible outcomes for people with MS and those who care for them.
In 2017 MSNZ officially endorsed the report and have used the principles to direct and provide international support for our advocacy work into improving the access to treatments and services for people with MS in New Zealand.
Read more about Brain Health: Time matters in MS and the official report here.
MSBase
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.
MSBase is the first funded project of the New Zealand Multiple Sclerosis Research Trust with the two pilot sites, Canterbury and Waikato, recently launched by Professor Butzkueven. To read more about this exciting project see the Trust’s announcement see here.