At the 2023 MDA conference, the scientific research portfolio director at Muscular Dystrophy Association detailed a session on collaborative research in ALS and ongoing efforts in the field. [WATCH TIME: 3 minutes]
WATCH TIME: 3 minutes
“I think some of these collaborations highlight the importance of data sharing and collecting of real world evidence that can be useful in terms of guiding policies or clinical trials. One of the challenges that were also brought up is the issue of access, and that's just not just specific for ALS. We can definitely learn from our findings in our studies of ALS, and that could be applicable to other types of neuromuscular diseases and neurodegenerative diseases.”
The term “collaboration” has been used as a buzzword in amyotrophic lateral sclerosis (ALS) and other walks of neurology between researchers, patients, and funders to help move the field forward. Although collaborative research is beneficial for accelerating the advancement of care, it can be challenging at times.
At the recent 2023 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, March 19-22, in Dallas, Texas, Edritz Javelosa, PhD, helped set up a session focused on ALS collaboration in the research and care areas. In the session, experts in neuromuscular medicine presented case studies as examples to show some of the benefits and challenges of collaboration across the medical workforce continuum. Additionally, the session highlighted several different examples of collaboration the ALS community should be informed of.1
Javelosa, scientific research portfolio director, MDA, sat down with NeurologyLive® in an interview at the conference to provide an overview of the session. In addition, she spoke more about the challenges the ALS community may face with collaboration and the important aspects of addressing them to ultimately improve clinical care for patients. Javelosa also shared her thoughts on the opportunities MDA’s conference brings to attendees, including networking, and what it could potentially hold for neuromuscular diseases.