The LONDC has made strides in advancing the Common Experience Research and Awareness Campaign. We’ve concluded our research, analysis is underway, and we are preparing to start a consensus process across clinical and community advisors!
About the Project
The LONDC’s mission is to improve the experiences and care of people living with late-onset neuromuscular diseases (LONDs). The Common Experience Research and Awareness Campaign aims to identify commonalities among LONDs, and streamline referral pathways to neuromuscular specialists.
Research Completed
- More than a dozen key opinion leader clinical observations and summarizations of literature on commonalities among and distinguishing features of LONDs
- More than 60 interviews with patients across 14 LONDs to understand first-hand experience with early signs and symptoms of these diseases
- More than 120 survey responses from primary care physicians, advanced practice providers, and neurologists to identify challenges in recognizing LONDs and making specialist referrals
Onward to Consensus
Our next step is to draw from these research efforts and work to gain alignment across stakeholders on the presenting symptoms that differentiate LONDs from more common diagnoses and identify the diagnostic triggers that should signal the potential presence of a late-onset neuromuscular condition.
To do this, we are assembling a diverse group of stakeholders to meet ahead of the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) annual meeting on October 14, 2024, in Savannah, Ga. We look forward to reporting on the discussion of this meeting.
Stay In the Know
More updates to follow soon – sign up for the LONDC newsletter to be the first to know of progress from this exciting initiative!
