Considerations Before Establishing an Environmental Health Registry

Public health registries can provide valuable information when health consequences of environmental exposures are uncertain or will likely take long to develop. They can also aid research on diseases that may have environmental causes that are not completely well defined.We discuss factors to consider when deciding whether to create an environmental health registry. Those factors include public health significance, purpose and outcomes, duration and scope of data collection and availability of alternative data sources, timeliness, availability of funding and administrative capabilities, and whether the establishment of a registry can adequately address specific health concerns.We also discuss difficulties, limitations, and benefits of exposure and disease registries, based on the experience of the Agency for Toxic Substances and Disease Registry.The use of public health registries has become increasingly common in the past 2 decades.1,2 Although they are widespread in the context of immunizations, cancer epidemiology, and drug development research,3 the field of environmental health has also benefited from the establishment of a number of disease and exposure registries.A registry is generally defined as a set of records containing systematically collected, standardized data about individual people.4 These data are typically acquired, maintained, and updated over a prolonged period, usually years. Registries range from only a listing of exposed individuals with associated contact information to a research repository of information that includes demographics, exposure data, and health information. A public health registry is set up to accomplish a public health goal or activity. It might be used to obtain information on people who have a particular disease, a condition or a risk factor that predisposes them to illness from a health-related event, or previous exposure to substances or circumstances known or suspected to cause adverse health effects. The particular data assembled are a function of the purpose of the registry. The variables might be chosen to help study or detect specific health problems or to study treatments in specific individuals or disorders. In the context of environmental health, registries include information regarding individual exposures to chemical or physical environmental agents or the known or potential consequences of such exposures.The central purpose of a registry is to facilitate epidemiological research or provide information to registrants about a certain disease, exposure, or event. Registries are also used to generate relevant statistics about the group of registered people. We discuss the main factors to consider when deciding whether to create an environmental health registry. We also discuss some of the difficulties, limitations, and benefits of registries, based on the experience of their use by the Agency for Toxic Substances and Disease Registry (ATSDR) in the United States.