The LONDC hosted its first consensus discussion on October 14, 2024, in Savannah, GA, ahead of the AANEM Annual Meeting. This meeting assembled a diverse group of more than 20 individuals, including neuromuscular specialists and key opinion leaders (7), representatives from patient communities and members of the LONDC Steering Committee (9), and industry partners and sponsors (6).
Drawing from primary research insights, the LONDC sought alignment from the clinical and patient communities on 1) the presenting symptoms that differentiate late-onset neuromuscular diseases (LONDs) from other more common diagnoses, and 2) the diagnostic triggers that should signal the possibility of a neuromuscular condition. This first session was intended to:
- Secure feedback on the research findings, including patient interviews, healthcare provider survey responses, and disease catalogue
- Surface key considerations and endpoints to incorporate in the clinical tool
- Review and iterate on an early outline of the clinical tool
We were successful in outlining the combination of symptoms broadly indicative of LONDs, and aligning on the actions first-line healthcare providers could take to more quickly identify patients who need to see a neuromuscular specialist on the basis of a suspected LOND.
Next Steps
In 2025, we will continue to refine and iterate this clinical tool with the clinical and community leaders with the goal of driving earlier recognition of LONDs. We welcome additional participation and perspectives in these continued consensus discussions. If you are interested, please contact LONDC@neuromuscularfoundation.org.
Thank You
The LONDC’s work is made possible by passionate healthcare professionals, community partners, and committed industry sponsors. We recognize and thank our 2024 champion sponsors Amgen, argenx, Catalyst Pharmaceuticals, and UCB and supporter Amicus Therapeutics for supporting this important initiative.
