Title:
Oregon Systematic Tracking of Elevated Lead Levels and Remediation (STELLAR) Database
Abstract:
STELLAR is a software application provided free of charge by the Centers of Disease Control (CDC) to State and local Childhood Lead Poisoning Prevention Programs (CLPPPs) with a practical means of tracking medical and environmental activities in lead poisoning cases. The intent of this application is to provide an electronic means of storing childhood lead exposures, medical, and laboratory data that the state program receives from labs, providers, clinics, parents, and local health departments.
In Oregon, STELLAR is a database that contains all childhood blood lead tests from 1991 to present. While the focus is children, the file does contain data and information on adults. Data and information comes from all clinical laboratories known to the Oregon Childhood Lead Poisoning Program. Data and information is transmitted by mail and fax, and electronic records are through Oregon’s National Electronic Disease Surveillance System - Electronic Lab Reporting (NEDSS-ELR) project.
Supplemental information:
Unfortunately, risk factors for exposure to lead hazards are still relatively common in many parts of the US. Two major factors place children at higher risk for lead poisoning, living in poverty and living in older housing (primarily pre-1950). According to the National Health and Nutrition Examination Survey NHANES III, Part 2, poor children were four times as likely to have elevated blood lead levels (EBLLs) as middle income children and eight times as likely as high income children. In the same survey, children living in pre-1946 housing were five times as likely to have EBLLs as children living in housing built after 1973. To make the problem worse, we know that poor children tend to live in older housing.
Are there legal restrictions on access or use of the data?
Access constraints:
Confidential medical and health information is protected by federal and state laws. Information collected by the Oregon Lead Poisoning Prevention Program is secure from public disclosure. However, the data without personal identifiers are available to researchers to assist them in research with restrictions and legal prerequisites for using the data set after access is granted. These include any access constraints applied to assure the protection of privacy or intellectual property, and any special restrictions or limitations on obtaining the data set. Access to this data requires formal IRB approval.
Use constraints:
Before the release of any data, all research proposals requesting the use of confidential lead test data must be reviewed by Oregon Department of Human Services, State Public Health Division for compliance with the following criteria:
1) Proposed research will be used to determine elevated blood lead levels, focus additional testing for Oregon residents, and reduce the burden of elevated blood lead levels;
2) Data requested are necessary for the efficient conduct of the study;
3) Adequate protections are in place to provide secure conditions to use and store the data;
4) Assurances are given that the data will only be used for the purposes of the study, and assurances that confidential data will be destroyed at the conclusion of the study;
5) Researcher(s) have adequate resources to carry out the proposed research;
6) Research proposal has been reviewed and approved by the Oregon Department of Human Services, State Public Health Division's Committee for the Protection of Human Subjects or is exempt from such review;
7) Any additional safeguards needed to protect the data from inadvertent disclosure due to unique or special characteristics of the proposed research have been required of the researcher.