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

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.
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