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Updated: Sep 13, 2025
12:35
Clinical Testing and Spinal Cord Removal in a Mouse Model for Amyotrophic Lateral Sclerosis ALS
Published on: March 17, 2012
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Research access barriers in amyotrophic lateral sclerosis.
Elisa Giacomelli1, Erica Scirocco1, Max Higgins1
1Sean M. Healey and AMG Center for ALS & the Neurological Clinical Research Institute, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Summary
As amyotrophic lateral sclerosis (ALS) affects more people, clinical trial participation barriers are rising. This report outlines strategies like decentralized trials and partnerships to improve access and accelerate ALS treatment development.
Area of Science:
- Neurology
- Clinical Research Methodology
- Public Health
Background:
- Aging global population increases amyotrophic lateral sclerosis (ALS) incidence and prevalence.
- Growing ALS prevalence presents challenges to clinical research participation.
- Existing barriers hinder access to vital ALS clinical studies.
Purpose of the Study:
- To identify key challenges limiting participation in ALS clinical research.
- To highlight available resources for enhancing ALS clinical trial access.
- To propose practical strategies for overcoming participation barriers in ALS research.
Main Methods:
- Review of current challenges and resources in ALS clinical research.
- Emphasis on education and engagement strategies for stakeholders.
- Proposal of decentralized and remote participation models.
Main Results:
- Decentralized trial models and remote participation options can improve access.
- Patient navigators, advisory committees, and digital tools enhance outreach.
- Strengthening partnerships across stakeholder groups is crucial.
Conclusions:
- Addressing accessibility and fostering trust are essential for advancing ALS treatments.
- Collaborative efforts among patients, caregivers, researchers, and industry can accelerate therapeutic development.
- Implementing proposed strategies will help align research with community needs and overcome participation barriers.
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