2014 Joint ACTRIMS-ECTRIMS Meeting
EMSP Highlights Report
For us at the European Multiple Sclerosis Platform (EMSP), medical congresses are one of the highlights of our calendar and this year’s joint ACTRIMS-ECTRIMS congress held in Boston was no exception. Congresses enable healthcare professionals and researchers to share the latest clinical updates and scientific breakthroughs; however we know that not everyone is always able to attend to hear first-hand. In this special report we provide you with a snapshot of the latest research and news announced and social media activity
Key Announcements and Highlights
International conferences are a good way to find out more about research going on around the world to help those with MS. We’ve summarised some of the key highlights from the presentations below and included a link to access further information online.
As part of a global push to find treatments for progressive MS, the International Progressive MS Alliance announced funding for 22 new research projects. The projects, which caused a lot of excitement at MSBoston2014, will bring MS Societies from all around the world together to help fund research and therapies for people with progressive MS. The global funding will speed up research into the condition, as scientists will be able to share knowledge and avoid duplicating work.
Biogen Idec announced the results of its international survey, developed in partnership with the State of MS Consortium, which showed differences in the perceptions of MS patients and neurologists when discussing symptoms. While overall the results suggest a positive assessment of current practice in MS, important gaps were identified that could potentially impact disease management and patient quality of life, with one in five patients saying they were uncomfortable talking about their symptoms with their doctor.
Parents of Patients with MS
A study to describe the experience of parents of MS patients under 18 years found that parents have a strong reaction to their child’s diagnosis of MS and are deeply affected by living with MS over time. It was concluded that parents need support to manage family issues while negotiating treatment and care with their child. Management should focus not only on the patient, but on supporting the family unit.
#MSBoston2014: Social Media and the Congress
The advent of social media allows delegates to share live updates and continue conversation beyond the confines of the congress hall. We at the EMSP have been early adopters of social media and firmly believe in its power as a medium of communication and are excited to see social media use amongst the medical community growing so rapidly. This year engagement during ACTRIMS-ECTRIMS 2014 surpassed previous years and the official #MSBoston2014 hashtag registered some impressive statistics:
Most Popular #MSBoston2014 Tweet:
Click here to read Greg Orlick’s Story, along with those who were following #MSBoston2014
Social Media was also used in other forms to convey information to key stakeholders at MSBoston 2014, such as the Q&A session between EMSP and Novartis on twitter using the hash tag #4patients, and the MS Trust Blog which provided live updates each day. The blog was an innovative way to keep followers up to date on the latest news, even if they were unable to attend.
EMSP at MSBOSTON 2014
The Joint ACTRIMS-ECTRIMS Meeting was an important opportunity for us to share information with the medical community and it was great to see that MS patients and advocates had an increased presence at the meeting.
The main highlights for us were a dissemination event on the 11th and 12th September and two poster presentations for the EMSP’s European Register for Multiple Sclerosis (EUReMS), which were presented by scientists involved with the project from the start.
EUReMS, launched in 2011 and run by a consortium of academic institutions and NGOs, addresses the lack of data at EU and national level on treatment and care for people with MS. When concluded, at the end of 2014, EUReMS will help all relevant stakeholders in Europe better understand the nature and impact of MS, and shape research and policy action towards improving the quality of life of those affected.
MS Nurse PROfessional
Coinciding with the Joint ACTRIMS-ECTRIMS Meeting, we took the opportunity to announce that 1,500 multiple sclerosis nurses have now enrolled for the ground-breaking online tool, MS Nurse PROfessional, since its launch in 2012.
The first CME-accredited educational programme is designed to standardise care for people with multiple sclerosis across Europe and is currently available in four languages (English, Spanish, Czech and Italian).
To find out more or register for the course, visit:http://www.msnursepro.org/
This activity is supported by educational grants from founding and lead support Novartis and co-supporters Biogen Idec, Genzyme, Teva and Bayer HealthCare
 Source: Sysomos (English Language) Search terms: #MSBoston201. Analytics run from 10 – 13 September 2014