Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry's Research Notification Mechanism

Key points

The purpose of this study was to describe how the Research Notification Mechanism - one of the research resources provided by the National ALS Registry - is linking PALS to scientists who are conducting research, clinical trials, and epidemiological studies.

Screenshot of first two pages of paper

Affiliates

Paul Mehta [1], Jaime Raymond [1], Moon Kwon Han [1], Theodore Larson [1], James D Berry [2], Sabrina Paganoni [2], [3], Hiroshi Mitsumoto [4], Richard Stanley Bedlack [5], D Kevin Horton [1]

  1. Agency for Toxic Substances and Disease Registry, Centers for Disease Control and Prevention
  2. Sean M Healey & AMG Center for ALS, Massachusetts General Hospital
  3. Spaulding Rehabilitation Hospital, Harvard Medical School
  4. Department of Neurology, Columbia University College of Physicians and Surgeons
  5. Department of Neurology, Duke University School of Medicine

Journal

Journal of Medical Internet Research

Summary

ALS Researchers face challenges in patient recruitment such as obtaining sufficient statistical powers and finding recruits that meet eligibility requirements; similarly, persons with ALS (PALS) face difficulty finding and enrolling in research studies for which they are eligible. The National ALS Registry’s Research Notification Mechanism benefits PALS and ALS researchers providing a tool for researchers to expand recruitment and connecting PALS to appropriate research.

Link to Paper

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Content Source:
Agency for Toxic Substances and Disease Registry