PMID- 33860698
OWN - NLM
STAT- MEDLINE
DCOM- 20210825
LR  - 20220802
IS  - 2167-9223 (Electronic)
IS  - 2167-8421 (Print)
IS  - 2167-8421 (Linking)
VI  - 22
IP  - 5-6
DP  - 2021 Aug
TI  - Recruitment of population-based controls for ALS cases from the National ALS 
      Registry.
PG  - 395-400
LID - 10.1080/21678421.2021.1887262 [doi]
AB  - Objective: In 2010, the United States Agency for Toxic Substances and Disease 
      Registry (ATSDR) created the National ALS Registry (Registry) to examine the 
      epidemiology of ALS and potential risk factors. We are currently recruiting 
      population-based controls for an epidemiologic case-control study to examine ALS 
      environmental risk factors using this Registry. To date, we have recruited 181 
      non-diseased, population-based controls for comparison to Registry cases 
      (n = 280). Here we report our recruitment methods for controls and the associated 
      response rates and costs. Methods: Eligible ALS cases had complete risk factor 
      survey data, DNA analysis, and blood concentrations of persistent organic 
      pollutants (POPs). Age, sex, and county-matched controls were identified from 
      commercial/consumer databases using a targeted landline phone sample. Eligible 
      controls were consented, surveyed, and mailed the POPs' blood analysis consent 
      form. Once consented, phlebotomy was scheduled. Results: We mailed 3760 
      recruitment letters for 181 potential case-matches across 42 states between 
      9/2018 and 3/2020. After making phone contact and determining eligibility, 146 
      controls agreed to participate (response rate = 11.4%, cooperation rate = 22.8%). 
      To date, 127 controls completed the survey and bloodwork. Though controls were 
      matched to cases on age, sex, and county, unmatched characteristics (e.g. 
      smoking) did not differ statistically. Interviewing and incentive costs are 
      estimated at $211.85 per complete participation. Conclusions: Recruiting matched 
      population-based controls for comparison to cases from the Registry for a study 
      involving completion of a detailed survey and blood specimen provision is 
      relatively feasible and cost effective. This recruitment method could be useful 
      for case-control studies of other rare disorders.
FAU - Bear, Todd M
AU  - Bear TM
AD  - Graduate School of Public Health, Department of Behavioral and Community Health 
      Sciences, University of Pittsburgh, Pittsburgh, PA, USA.
FAU - Malek, Angela M
AU  - Malek AM
AD  - Department of Public Health Sciences, Medical University of South Carolina, 
      Charleston, SC, USA.
FAU - Foulds, Abigail
AU  - Foulds A
AD  - Graduate School of Public Health, Department of Behavioral and Community Health 
      Sciences, University of Pittsburgh, Pittsburgh, PA, USA.
FAU - Rager, Judith
AU  - Rager J
AD  - Department of Epidemiology, Graduate School of Public Health, University of 
      Pittsburgh, Pittsburgh, PA, USA, and.
FAU - Deperrior, Sarah E
AU  - Deperrior SE
AD  - Department of Epidemiology, Graduate School of Public Health, University of 
      Pittsburgh, Pittsburgh, PA, USA, and.
FAU - Vena, John E
AU  - Vena JE
AD  - Department of Public Health Sciences, Medical University of South Carolina, 
      Charleston, SC, USA.
FAU - Larson, Theodore C
AU  - Larson TC
AD  - Agency for Toxic Substances and Disease Registry, National ALS Registry, Atlanta, 
      GA, USA.
FAU - Mehta, Paul
AU  - Mehta P
AD  - Agency for Toxic Substances and Disease Registry, National ALS Registry, Atlanta, 
      GA, USA.
FAU - Horton, D Kevin
AU  - Horton DK
AD  - Agency for Toxic Substances and Disease Registry, National ALS Registry, Atlanta, 
      GA, USA.
FAU - Talbott, Evelyn O
AU  - Talbott EO
AD  - Department of Epidemiology, Graduate School of Public Health, University of 
      Pittsburgh, Pittsburgh, PA, USA, and.
LA  - eng
GR  - CC999999/ImCDC/Intramural CDC HHS/United States
GR  - R01TS000272/ACL/ACL HHS/United States
GR  - R01 TS000272/TS/ATSDR CDC HHS/United States
PT  - Journal Article
PT  - Research Support, U.S. Gov't, P.H.S.
DEP - 20210416
PL  - England
TA  - Amyotroph Lateral Scler Frontotemporal Degener
JT  - Amyotrophic lateral sclerosis & frontotemporal degeneration
JID - 101587185
SB  - IM
MH  - *Amyotrophic Lateral Sclerosis/epidemiology
MH  - Case-Control Studies
MH  - Databases, Factual
MH  - Humans
MH  - Patient Selection
MH  - Registries
MH  - United States/epidemiology
PMC - PMC9014325
MID - NIHMS1726680
OTO - NOTNLM
OT  - Amyotrophic lateral sclerosis
OT  - biorepository
OT  - controls
OT  - registry
OT  - risk factor
COIS- Declaration of interest The authors report no conflict of interest. The findings 
      and conclusions in this report are those of the authors and do not necessarily 
      represent the official positions of the Agency for Toxic Substances and Disease 
      Registry, the Centers for Disease Control and Prevention, and/or the United 
      States Department of Health and Human Services (HHS).
EDAT- 2021/04/17 06:00
MHDA- 2021/08/26 06:00
PMCR- 2022/08/01
CRDT- 2021/04/16 08:38
PHST- 2021/04/17 06:00 [pubmed]
PHST- 2021/08/26 06:00 [medline]
PHST- 2021/04/16 08:38 [entrez]
PHST- 2022/08/01 00:00 [pmc-release]
AID - 10.1080/21678421.2021.1887262 [doi]
PST - ppublish
SO  - Amyotroph Lateral Scler Frontotemporal Degener. 2021 Aug;22(5-6):395-400. doi: 
      10.1080/21678421.2021.1887262. Epub 2021 Apr 16.