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2 Use of Registries in Environmental Health Research
Pages 27-42

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From page 27...
... The limitations of registry data, specifically the common biases encountered, are then discussed. This is followed by an examination of the characteristics of some potential comparison populations that might be used in studies of health outcomes in the participants in the Airborne Hazards and Open Burn Pit (AH&OBP)
From page 28...
... Other uses of registry data include generating hypotheses about specific exposures and health effects that may not have been considered otherwise and discovering previously unidentified associations between exposures and health problems, particularly if the health event of concern is rare or distinctive. The data may motivate more focused investigations of health outcomes and give researchers information they can use to develop better designed studies.
From page 29...
... ; depleted uranium or embedded fragments; ionizing radiation; and such hazards as smoke from oil-well fires, wind-borne dust, or chemical pollution. Four of the seven active VA exposure registries are targeted at 1990–1991 Gulf War (Operation Desert Shield and Operation Desert Storm)
From page 30...
... . Depleted 1990s­–present 79 Veterans of the Gulf War, Bosnia, Operation Screening via an Uranium Follow- Desert Shield, Operation Desert Storm, and exposure questionnaire up Operation Iraqi Freedom (OIF)
From page 31...
... However, others such as the Agent Orange and the Depleted Uranium Follow-Up registries serve as both databases of health surveillance for their respective populations for VA and sources of data used in epidemiologic studies. For example, the Agent Orange Registry population was used in at least five studies examining the health conditions of these veterans.
From page 32...
... Gulf War Oil August 2, 1990– 750,000 Members of the armed forces exposed to Daily oil-well fire Well Fire Smoke February 28, fumes of burning oil in connection with smoke exposure 1991* Operation Desert Storm.
From page 33...
... Subsequent sections address the challenge of identifying an appropriate comparison population to use in evaluations of health outcomes and discuss the cumulative effect these weaknesses exert and how they limit the extent to which registry data may be used to evaluate exposure–health outcome associations. Chapter 3 offers additional observations on how these considerations affect the scientific value of information from the AH&OBP Registry.
From page 34...
... will be overrepresented in the study population. The effects of selective participation bias may be mitigated through an improved representation of participants obtained through changes to messaging or more targeted outreach and communications and by providing incentives to respond -- targeting eligible persons who were potentially exposed, but who are not currently experiencing adverse health outcomes, for example.
From page 35...
... Respondents report whether they believe they were exposed to various chemical, environmental, or biological agents, but quantifying actual exposure intensity or differentiating among specific chemical components is much more difficult. Furthermore, subjective exposure reports are strongly influenced by recall bias (persons who are ill, or believe themselves highly exposed, may differentially overestimate past exposures, for example)
From page 36...
... However, none of those surveys are well suited for comparisons with the registry population, except for possibly the Millennium Cohort Study, a prospective longitudinal survey of post-9/11 service members and veterans explicitly designed to collect data on and assess relationships between potential exposures and health outcomes (Ryan et al., 2007)
From page 37...
... Responses from the baseline and follow-up surveys are routinely matched with Defense Manpower and Data Center records data, and potential participants in the Millennium Cohort Study who meet the eligibility for the AH&OBP Registry could be identified. If that were possible, demographic and military service characteristics distributions, as well as exposures and health outcomes collected by Millennium Cohort Study, could be compared with those reported by post-9/11 registry participants.
From page 38...
... Registry data may, however, motivate epidemiologic studies that would be better designed as a result of the information they generate. For example, a well-designed questionnaire that captured participants' self-reported information could signal the presence of an unusual or atypical health outcome.
From page 39...
... 1991. Posttraumatic stress disorder among Vietnam veterans on the Agent Orange Registry.
From page 40...
... Pre pared for the Committee on the Assessment of the Department of Veterans Affairs Airborne Hazards and Open Burn Pit Registry. November 20.
From page 41...
... 2015b. Agent Orange Registry health exam for veterans.


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