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Screenshot from the leadinfo.nd.edu website highlighting collaborations which enable more Indiana counties to receive the test kits via the Indiana Collaboration for Lead Action and Prevention (ICLAP)

IU REDCap facilitates home lead screening by Notre Dame researchers

IU REDCap securely manages data for University of Notre Dame (UND) researchers about Indiana homes impacted by lead. Lead in homes often comes from a legacy of deindustrialization and UND doesn't want communities negatively impacted for trying to fix the problems they inherited.

South Bend Indiana is home to the University of Notre Dame, and one of the nation’s highest rates of juvenile lead poisoning, according to a Reuter’s study from 2016. Matthew Sisk, Associate Professor of the Practice in GIS and Data Science at the Lucy Family Institute for Data & Society at Notre Dame, has partnered with IU REDCap to manage the data of about 400 potentially impacted homes, in order to help with remediation efforts.

Lead in homes often comes from a legacy of deindustrialization. We didn’t want communities negatively impacted for trying to fix the problems they inherited, and REDCap helps ensure their data is kept safely.

Matthew Sisk

Matthew Sisk Associate Professor of the Practice in GIS and Data Science at the Lucy Family Institute for Data and Society, University of Notre Dame

“We know lead is an environmental risk, so we have focused the survey to be on the home,” explained Sisk, who says the project, the ND Lead Innovation Team, aims to refocus public health surveillance efforts to help prevent childhood lead exposure, rather than wait for a pediatrician’s blood test to confirm. “Too often, Indiana’s children are the canary in the coal mine when it comes to lead,” he continued.

The home screening kits ask residents to gather samples of indoor dust and paint as well as outdoor soil for lab analysis. Because high levels of lead can negatively impact a home’s property value, REDCap’s data security features help keep families’ investments safe. “Lead in homes often comes from a legacy of deindustrialization” explained Sisk, “We didn’t want communities negatively impacted for trying to fix the problems they inherited, and REDCap helps ensure their data is kept safely” he continued.

Survey participants send in soil and dust samples to the Notre Dame Lead Innovation Team, which securely stores information using IU’s instance of REDCap.

The survey is also expected to help manage incoming caseloads of lead exposure, as Indiana’s Department of Health upgrades their guidance on acceptable levels of lead present in the bloodstream this year. “There is no safe amount of lead in the bloodstream, however the state has what’s called acceptable limits, which determines medical treatment” said Sisk. As new guidance comes into effect lowering the acceptable limit for Indiana children, Sisk, along with officials, expects there to be an influx of new patients who qualify for treatment. “This screening tool can help triage cases,” said Sisk.

With about three-quarters of survey participants accessing the REDCap survey by phone, the team has developed a digital dashboard for easy access to critical information. The remaining quarter of participants fill out and mail in paper forms which are entered manually. Using the South Bend dashboard as a template, Sisk’s team has also developed pilot surveys for communities in Milwaukee, Wisconsin and Oakland, California, which are similarly impacted by lead exposure in children, in collaboration with the federal agency for Housing and Urban Development (HUD.)

“If you live in an old house, like my family does, lead is there, but it can be managed,” said Sisk who explained that simple measures, like taking off shoes indoors, or using a disposable duster when dusting are small steps that pay off in the long run.