Related Experiment Video
Updated: Apr 26, 2026
Author Spotlight: Exploring Sex-Specific Glial Signatures and Therapeutic Leads for Alzheimer's Disease
Published on: May 20, 2024
The National ALS Registry: a recruitment tool for research
Angela M Malek1, David E Stickler, Vinicius C Antao
1Department of Neurosciences, Medical University of South Carolina, 135 Cannon Street, Room 305L, Charleston, South Carolina, 29425, USA.
Introduction:
Subject recruitment is critical for understanding fatal diseases like ALS, however linking patients with researchers can be challenging. The U.S. population-based National ALS Registry allows recruitment of persons with ALS (PALS) for research opportunities.
Methods:
The Registry's Research Notification Mechanism was used to recruit PALS aged ≥21 years; participants completed a Web-based epidemiologic survey. PALS (n = 2,232) were sent an email describing the study, and 268 surveys were completed.
Results:
The mean age (± SD) of eligible participants was 57.7 ± 9.3 years for men and 61.5 ± 8.9 for women. Most were men (63%) and Caucasian (92%). Of 256 potentially eligible participants, 37.5% (n = 96) returned an authorization to disclose protected health information. ALS was confirmed for 94% (83/88) from physician responses.
Conclusions:
This analysis demonstrates the National ALS Registry's usefulness in recruiting PALS for research. This recruitment source can potentially foster the discovery of better treatment options and therapies, and of prevention strategies.
More Related Videos
12:21Examining the Role of Nasopharyngeal-associated Lymphoreticular Tissue NALT in Mouse Responses to Vaccines
Published on: August 1, 2012
09:34Targeted Next-generation Sequencing and Bioinformatics Pipeline to Evaluate Genetic Determinants of Constitutional Disease
Published on: April 4, 2018
Related Concept Videos
01:26National Nursing Organizations I
01:25Applications Of NMR In Biology
01:30National Nursing Organizations II
The AACN emphasizes a healthy work environment through six standards to achieve an optimal patient outcome. The standards are appropriate staffing, meaningful recognition, collaboration, authentic leadership, effective communication, and decision-making. In addition, AACN provides certification programs, webinars, journals, and...
01:40Archival Research