It’s a dance, it’s a dip, it’s an … ALS research network?
SALSA, MDA’s Southeast ALS Alliance, brought together a piquant blend of nearly 30 professionals from 11 hospitals in the Southeastern United States this May to share information and discuss topics such as ALS clinic management and practices, patient resources, current ALS research and patient care approaches.
Jonathan Glass, director of the MDA/ALS Center at Emory University in Atlanta, organized and hosted the event. Conferees included neurologists, clinician-scientists, social workers, dieticians, respiratory therapists, nurses, and physical and occupational therapists.
MDA’s Emory clinic is one of five centers that comprise MDA’s ALS-focused Clinical Research Network, which was launched in fall 2008 to develop studies into standardized clinical care; develop outcome measures for clinical studies and trials; and develop and test new treatments. (For more on the network, see “ALS to be a major focus in new MDA Clinical Research Network,” October 2008.)
Each of MDA’s four other ALS Clinical Research Network centers plans to host regional meetings like SALSA, with the goals of sharing the latest research, recruiting institutions for future multicenter clinical trials, and enhancing care.
Peter Donofrio, director of the MDA/ALS Center at Vanderbilt University Medical Center in Nashville, Tenn., says one of the most important issues discussed at the SALSA meeting was “working together as one group in the Southeastern United States to further research and development in the area of ALS.”
The exciting part for individuals affected by ALS, he says, is “the potential research in the disease that may affect them and their families.”
Notes Donofrio, “This integrates very well with MDA’s goals to coordinate and encourage research in ALS that affects patients directly.”
The Emory-led group plans to meet again in six months.