Fueling a Learning Ecosystem
NEALS has built more than a research network – it’s a collaborative learning ecosystem that empowers clinicians, researchers, people living with ALS and advocates to grow together and drive excellence in ALS trials
Training the Next Generation of Researchers
In 2009, NEALS launched the first Principal Investigator (PI) Training Course to prepare emerging researchers to lead high-quality ALS clinical trials. The concept was pioneering: train not only scientists but the entire clinical trial workforce - coordinators, monitors, and data specialists - in the skills necessary to ensure rigor, efficiency, and patient-centeredness.
Since then, NEALS training programs have reached thousands of professionals and continue to expand through workshops, committee-led education, and mentorship opportunities that connect junior investigators with experienced leaders in the field.
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NEALS has played a central role in defining and elevating the standards of ALS clinical trials. By developing and validating core outcome measures such as the ALSFRS-R and promoting the adoption of standardized protocols, NEALS ensures consistency, accuracy, and credibility across trial sites. Its commitment to data sharing and cross-trial comparability accelerates discovery and enhances the impact of research efforts.​
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Complementing these efforts, NEALS supports clinical research teams at every level through workshops, mentorship, and formal training programs. NEALS equips trial teams with the expertise needed to conduct rigorous, high-quality research. Trainings and workshops provide research staff and both early-career and experienced investigators opportunities to refine protocols and collaborate, fostering a culture of continuous learning and innovation.
In response to evolving needs and member interests, NEALS also offers topical, hands-on learning experiences. Recent examples include:
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A Cross-Committee Workshop on Feeding Tubes and ALS, integrating perspectives from palliative care, respiratory, bulbar, and nutrition experts to strengthen multidisciplinary care approaches.
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A CME-accredited Respiratory Care and Ventilation Workshop, featuring live demonstrations on non-invasive ventilation, portable spirometry, and home-based pulmonary function monitoring tools.
These trainings, exclusively available to NEALS member sites and their teams, demonstrate NEALS’ ongoing commitment to equipping the ALS research community with the skills, knowledge, and collaboration needed to raise the standard of care.
Through the Clinical Research Staff Training & Development Workshop and Outcome Measure Training, NEALS has trained hundreds of PIs and study coordinators.
Empowering the ALS Community: The CRLI
In 2011, NEALS launched the ALS Clinical Research Learning Institute® (CRLI), a two-day educational program designed for individuals impacted by ALS who want to understand and contribute to clinical research and therapy development. Participants learn about study design, data analysis, ethical considerations, and community engagement opportunities. Upon completion, graduates become ALS Research Ambassadors, equipped to share knowledge, advise research teams, and inspire others to participate in trials.
To date, hundreds of Ambassadors have completed the program; many serving on advisory boards, research panels, and committees shaping the future of ALS studies. With sustained funding, NEALS plans to expand the CRLI through hybrid in-person and virtual formats, and to offer member sites the opportunity to apply for support to host their own regional CRLIs or subcommittee workshops - bringing this vital training to more communities worldwide.
Creating Infrastructure for Discovery
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ASDF
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ASDF
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First Centralized ALS Biorepository
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Sustaining the Pipeline of Innovation
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