Journal
MUSCLE & NERVE
Volume 50, Issue 5, Pages 830-834Publisher
WILEY-BLACKWELL
DOI: 10.1002/mus.24421
Keywords
ALS; amyotrophic lateral sclerosis; National ALS Registry; recruitment; research
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Funding
- NCATS NIH HHS [UL1 TR000062] Funding Source: Medline
- Intramural CDC HHS [CC999999] Funding Source: Medline
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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. Muscle Nerve50: 830-834, 2014
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