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CLT-01 The NEALS Consortium - a collaborative research organization.

Tara C Lincoln1, Carly Allen2

  • 1NEALS, Lost Angeles, CA, USA.

Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration
|November 9, 2019
PubMed
Summary

The Northeastern ALS Consortium (NEALS) has significantly increased participation in ALS clinical trials by people with ALS (PALS), fostering research collaborations and accelerating therapeutic development. Their inclusive approach and PALS engagement highlight a successful model for advancing ALS research.

Keywords:
clinical trialeducationresearch

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Area of Science:

  • Neurology
  • Clinical Research
  • Biomedical Science

Background:

  • The Northeastern ALS Consortium (NEALS) is a non-profit organization dedicated to advancing Amyotrophic Lateral Sclerosis (ALS) research and awareness.
  • NEALS fosters collaboration among clinicians, researchers, and industry through open scientific communication.
  • The organization has a 25-year history of developing novel research approaches and recruiting investigators to accelerate ALS clinical trials.

Purpose of the Study:

  • To promote research and awareness of ALS.
  • To accelerate ALS clinical trials through academic input and industry partnerships.
  • To enhance the accessibility of clinical trials through an inclusive network of academic sites.

Main Methods:

  • NEALS employs an inclusive policy for adding clinical sites, expanding trial access globally.
  • The consortium includes 127 academic ALS trial centers across the United States, Canada, Mexico, Lebanon, Italy, Australia, and Israel.
  • Educational initiatives and the PALS (People with ALS) community engagement, including Research Ambassadors, are integral to their approach.

Main Results:

  • NEALS has successfully conducted numerous clinical trials, serving as a benchmark for the consortium's success.
  • Participation of People with ALS (PALS) in NEALS studies has grown substantially, from 101 in 1999 to 4,173 in 2018.
  • A total of 125,286 PALS have participated in NEALS studies since 1999, demonstrating strong community trust and engagement.

Conclusions:

  • Healthcare professionals must emphasize the importance of clinical research for ALS causes and treatments.
  • Increased PALS involvement and informed public engagement in rare disease research drive scientific breakthroughs.
  • NEALS's coordinated efforts and strong PALS relationships position it as a credible leader in ALS research.