Abstract
Research conducted in the wake of a disaster can provide information to help mitigate health consequences, support future recovery efforts, and improve resilience. However, a number of barriers have prevented time-sensitive research responses following previous disasters. Furthermore, large-scale disasters present their own special challenges due to the number of people exposed to disaster conditions, the number of groups engaged in disaster response, and the logistical challenges of rapidly planning and implementing a large study. In this case study, we illustrate the challenges in planning and conducting a large-scale post-disaster research study by drawing on our experience in establishing the Gulf Long-term Follow-up (GuLF) Study following the 2010 Deepwater Horizon disaster. We describe considerations in identifying at-risk populations and appropriate comparison groups, garnering support for the study from different stakeholders, obtaining timely scientific and ethics review, measuring and characterizing complex exposures, and addressing evolving community health concerns and unmet medical needs. We also describe the NIH Disaster Research Response (DR2) Program, which provides a suite of resources, including data collection tools, research protocols, institutional review board guidance, and training materials to enable the development and implementation of time-critical studies following disasters and public health emergencies. In describing our experiences related to the GuLF Study and the ongoing efforts through the NIH DR2 Program, we aim to help improve the timeliness, quality, and value of future disaster-related data collection and research studies.