GLOBAL MSA RESEARCH ROADMAP
Defeat Multiple System Atrophy United International is committed to the Global MSA Research Roadmap that developed out of an international meeting in Las Vegas, Nevada over November 1-2, 2014. Attendees at that meeting included the world’s experts in the field of MSA, the leaders of MSA advocacy organizations, (including Defeat MSA Alliance), pharmaceutical industry representatives and other important stakeholders in the worldwide MSA community.
The primary task of the meeting was “to identify critical research areas where consensus and progress was needed to improve understanding, diagnosis, and treatment of the disease.” The chief organizers laid out nine focus areas and assembled eight working groups. Each group’s task was to develop a set of recommendations pertaining to their specific focus area. The nine areas were:
- preclinical modeling
- target identification
- clinical measures
- imaging biomarkers
- nonimaging biomarkers
- treatments/trial designs
- patient advocacy
The main organizer, Dr. Ryan Walsh, at the time, a movement disorder neurologist at the Lou Ruvo Center for Brain Health in Las Vegas, invited key people to chair and staff each working group. Each group established a series of priority-ranked research recommendations. Also included in the discussion were planned timelines and forward thinking strategies to secure the stated research objectives.
Defeat MSA Alliance founding director Philip Fortier was invited to the Global MSA Research Roadmap meeting by the principal medical organizer Dr. Walsh (who is now on staff at the Barrow Neurological Institute in Phoenix, AZ). As a representative of Defeat MSA Alliance, Mr. Fortier was appointed to the patient advocacy working group. At the time, Fortier was the group’s only member with a confirmed biological connection to Multiple System Atrophy (his brother Joseph died of MSA).
In the run-up to the Las Vegas meeting, the advocacy group surveyed the worldwide MSA patient and caregiver community to help develop an advocacy strategy, which was then distilled into four recommendations. In 2018, the Roadmap’s forward thinking recommendations were included in a report that was published in Neurology, the journal of the American Academy of Neurology (AAN). The entire paper can be read here per the courtesy of the American Academy of Neurology (AA). As part of the publication of this paper, Dr. Walsh included the recommendations of the eight working groups. We have excerpted them here below: