The National ALS Registry: A Recruitment Tool for Research

Details

• Alternative Title:
  Muscle Nerve
• Personal Author:
  Malek, Angela M. ; Stickler, David E. ; Antao, Vinicius C. ; Horton, D. Kevin
• Description:
  Introduction
  
  Subject recruitment is critical for understanding fatal diseases like ALS, however linking patients with researchers can be challenging. The US 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.
  
  Discussion
  
  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.
  
  
• Subjects:
  Adult Aged ALS Amyotrophic Lateral Sclerosis Article Biomedical Research Community Health Planning Female Humans Internet Male Middle Aged National ALS Registry Patient Selection Recruitment Registries Research United States Young Adult

  More +
• Source:
  Muscle Nerve. 50(5):830-834.
• Pubmed ID:
  25111654
• Pubmed Central ID:
  PMC4206601
• Document Type:
  Journal Article
• Funding:
  CC999999/Intramural CDC HHS/United States ; UL1 TR000062/TR/NCATS NIH HHS/United States
• Volume:
  50
• Issue:
  5
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:2f618a66adbfaef460baf6449dd85addcc3e01626456033ad2931d582494bb4d
• Download URL:
  https://stacks.cdc.gov/view/cdc/32965/cdc_32965_DS1.pdf
• File Type:
  [PDF - 315.26 KB ]