Recruitment of population-based controls for ALS cases from the National ALS Registry

Key points

Study reports recruitment methods for controls for an epidemiologic case-control study to examine ALS environmental risk factors. Authors utilized National ALS Registry Research Notification Mechanism for the recruitment effort.

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Affiliates

Todd M. Bear [1], Angela M. Malek [2], Abigail Foulds [1], Judith Rager [3], Sarah E. Deperrior [3], John E. Vena [2], Theodore C. Larson [4], Paul Mehta [4], D. Kevin Horton [4], and Evelyn O. Talbott [3]

  1. Graduate School of Public Health, Department of Behavioral and Community Health Sciences, University of Pittsburgh
  2. Department of Public Health Sciences, Medical University of South Carolina
  3. Department of Epidemiology, Graduate School of Public Health, University of Pittsburgh
  4. Agency for Toxic Substances and Disease Registry, National ALS Registry

Journal

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Summary

Population based controls for a case-control study examining ALS environmental risk factors were recruited through contact via the National ALS Registry. Control recruitment for studies with detailed survey information and blood specimens are relatively feasible and cost effective. This recruitment method could be useful for case-control studies of other rare disorders.

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Agency for Toxic Substances and Disease Registry