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 |
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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