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LONDC Moves to Develop Patient and Physician Tools

Jul 1, 2025, 09:14 by Maggie Schmidt (Admin)

The LONDC has made strides in their campaign to develop patient and physician tools.

In the first half of 2025, the Late-Onset Neuromuscular Disease Consortium (LONDC) made tremendous progress in advancing its first project, the Common Experience Research and Awareness Campaign. This campaign is designed to reduce the wait time and barriers to diagnosis for late-onset neuromuscular diseases (LONDs) by developing tools for patients and clinicians to facilitate faster and higher quality referrals to NM specialists.

Building on qualitative interviews of over 60 US-based patients across 17 LONDs, and insights from 120 clinician surveys (40 advanced practice, 40 primary care, and 40 community-based neurologists) completed in 2024, the LONDC identified key symptoms distinguishing LONDs from common diagnoses and identified diagnostic triggers for NM conditions. The next steps in the project are underway and focus on tool development:

A patient-focused mnemonic to help raise awareness of LONDs in the community and encourage self-advocacy for specialist referrals
A physician-focused tool to improve awareness and early recognition among primary care, advanced practice providers, and community neurologists
Consensus among clinicians on distinguishing symptoms of LONDs and the resulting physician-focused tool
A manuscript to present key findings of primary research and the resulting physician-focused tool

Development efforts will continue throughout the year. Learn more by visiting the LONDC at the AANEM Annual Meeting this October, or at www.londc.neuromuscularfoundation.org.

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