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Characteristics associated with participation in DNA banking: The National Registry of Veterans with ALS.

Publication ,  Journal Article
DiMartino, L; Allen, KD; Kasarskis, E; Lindquist, JH; Coffman, CJ; Oddone, EZ; National Registry of Veterans with ALS,
Published in: Contemp Clin Trials
September 2007

OBJECTIVE: Characteristics that may influence participation in DNA banks are not well defined. The purpose of this study was to examine characteristics associated with participation in a DNA bank among veterans diagnosed with Amyotrophic Lateral Sclerosis (ALS). METHODS: Veterans who screened eligible for the National Registry of Veterans with ALS were initially contacted about the DNA Bank via telephone and then mailed a consent form. Registry participants were then categorized as consented for the DNA bank, actively refused, or passively refused (consent form not returned after >3 months and multiple reminders). The associations of consent status with age, gender, race, military branch, years of military service, VA health system use, and ALS Functional Rating Scale (ALSFRS) scores were examined. RESULTS: Registry participants (N=1020) were 98% male, 9.5% non-white, and the mean age was 64.1 years. 61.1% of participants were current VA health system users, and the branches of service were: Army (46.1%), Navy (22.1%), Air Force (23.2%), and Marines (8.3%). A total of 14.7% of Registry participants refused DNA banking (9.4% active refusal, 5.3% passive refusal). Results from multivariable models indicated participants who were non-White, VA users, or had lower ALSFRS scores (reflecting poorer function) had higher odds of refusal. Race and VA use were associated with active refusal, while age and ALSFRS score were associated with passive refusal. CONCLUSION: Although the overall refusal rate for DNA banking was relatively low, we still found important differences in consent by race, VA use, and functional status in this cohort of veterans with ALS. Because differential participation in DNA banking may influence generalizability, further efforts are needed to understand and intervene to reduce these differences.

Duke Scholars

Published In

Contemp Clin Trials

DOI

ISSN

1551-7144

Publication Date

September 2007

Volume

28

Issue

5

Start / End Page

572 / 582

Location

United States

Related Subject Headings

  • Veterans
  • Sex Factors
  • Registries
  • Racial Groups
  • Public Health
  • Middle Aged
  • Male
  • Humans
  • General Clinical Medicine
  • Female
 

Citation

APA
Chicago
ICMJE
MLA
NLM
DiMartino, L., Allen, K. D., Kasarskis, E., Lindquist, J. H., Coffman, C. J., Oddone, E. Z., & National Registry of Veterans with ALS, . (2007). Characteristics associated with participation in DNA banking: The National Registry of Veterans with ALS. Contemp Clin Trials, 28(5), 572–582. https://doi.org/10.1016/j.cct.2007.01.009
DiMartino, Lisa, Kelli D. Allen, Edward Kasarskis, Jennifer H. Lindquist, Cynthia J. Coffman, Eugene Z. Oddone, and Eugene Z. National Registry of Veterans with ALS. “Characteristics associated with participation in DNA banking: The National Registry of Veterans with ALS.Contemp Clin Trials 28, no. 5 (September 2007): 572–82. https://doi.org/10.1016/j.cct.2007.01.009.
DiMartino L, Allen KD, Kasarskis E, Lindquist JH, Coffman CJ, Oddone EZ, et al. Characteristics associated with participation in DNA banking: The National Registry of Veterans with ALS. Contemp Clin Trials. 2007 Sep;28(5):572–82.
DiMartino, Lisa, et al. “Characteristics associated with participation in DNA banking: The National Registry of Veterans with ALS.Contemp Clin Trials, vol. 28, no. 5, Sept. 2007, pp. 572–82. Pubmed, doi:10.1016/j.cct.2007.01.009.
DiMartino L, Allen KD, Kasarskis E, Lindquist JH, Coffman CJ, Oddone EZ, National Registry of Veterans with ALS. Characteristics associated with participation in DNA banking: The National Registry of Veterans with ALS. Contemp Clin Trials. 2007 Sep;28(5):572–582.
Journal cover image

Published In

Contemp Clin Trials

DOI

ISSN

1551-7144

Publication Date

September 2007

Volume

28

Issue

5

Start / End Page

572 / 582

Location

United States

Related Subject Headings

  • Veterans
  • Sex Factors
  • Registries
  • Racial Groups
  • Public Health
  • Middle Aged
  • Male
  • Humans
  • General Clinical Medicine
  • Female