300 Section - R.A.C.E. to diagnose Amyotrophic Lateral Sclerosis (ALS)/Motor Neuron Disease (MND)

Wednesday, May 20, 2026

6:00 PM - 7:30 PM PT

Co-Author/Coautor(s)

JM

Jessica Mabe, MA

Programs Coordinator
International Alliance of ALS/MND Associations
Northampton, England, United Kingdom
Md

Martina de Majo, PhD

Scientific Director
International Alliance of ALS/MND Associations
Northampton, England, United Kingdom

Presenting Author/Autor expositor(s)

Cathy Cummings, MA

CEO
International Alliance of ALS/MND Associations
Coldwater, Ontario, Canada

Co-Author/Coautor(s)

JL

Jess Lee, MA

Director of Research
My Name'5 Doddie Foundation
Northampton, England, United Kingdom

Objectives : Amyotrophic Lateral Sclerosis (ALS) or Motor Neuron Disease (MND) is an adult-onset neurodegenerative disorder characterized by progressive and selective degeneration of motor neurons, resulting in loss of function and death commonly by respiratory failure within 2-5 years from symptom onset.

Diagnostic delay remains one of the hardest challenges in ALS/MND. The International Alliance of ALS/MND Associations conducted a literature landscape analysis and found that on average, people living with ALS/MND experience a diagnostic delay of 8-28 months. This delay is approximately 10-16 months in higher resourced countries but can reach years in under resourced areas.

Design:

Diagnostic delay in ALS/MND arises from the disease’s heterogeneous presentation, the absence of a definitive diagnostic test, and limited access to specialized clinicians. As a result, individuals often consult multiple professionals before reaching an ALS/MND expert, and misdiagnoses are frequent. Reducing diagnostic delay is critical, as it allows for earlier access to multidisciplinary care and treatments, and improved psychological and practical support for all people affected. Additionally, it lowers the risk of unnecessary interventions that can be costly and create trauma.

To address diagnostic delay, the Alliance, in collaboration with the My Name’5 Doddie Foundation and several thought leaders in the ALS/MND field, developed a course to equip healthcare professionals to recognize early signs of ALS/MND and refer timely to specialists.

Results: For more efficient communication we created the acronym R.A.C.E: Recognize red flags, Assess clinical features and initiate appropriate diagnosis, Communicate the need for and Expedite referral. This course is aimed at all health professionals that see people with ALS/MND before they are diagnosed, including professionals in rehabilitation medicine.

Conclusion: We are presenting this work in relevant forums, such as ISPRM, to raise awareness of diagnostic delay in ALS/MND and promote earlier recognition of its signs, a crucial step toward improving timely intervention and care.