There is no question we are all familiar with the word data these days. We interact with data in just about every aspect of our lives – we provide it, we use it, we create it. For researchers, it is the cornerstone of what we do. We’re always seeking data to answer new questions, solve puzzles that may improve health outcomes, or to understand the best treatment options. There are seemingly no limits to the amount or type of data that exist, whether it is in large administrative data sets, study specific data collection, or through companies who want to market to us.
As much data as there seems to be, there are many times researchers find they don’t have enough data or the right kind. Collecting it can be expensive, time consuming, and requires scientific rigor to ensure its accuracy. Often, we find that study data can only provide part of an answer to the questions we are seeking to discover, or we don’t have the time or resources to conduct primary data collection. That’s where public use data sets come in. Public use data sets, or PUDS, are typically free or low-cost datasets made available to researchers to help support their research agendas. These datasets have an established data collection method, with established variables, data dictionaries, and time frames. They may help define hypotheses around a particular research topic, help to inform the planning of future studies, or address a question which doesn’t require additional primary data collection.
In pediatric cardiovascular research PUDS can be very valuable. Conducting research with children is important, because children are not just little adults. Understanding how treatments and interventions affect their physical and mental health is critical to understanding both pediatric and adult health outcomes. However, because children are a vulnerable population, we also know that there are additional challenges to recruitment which can make studies more costly and more time consuming than adult studies. The Pediatric Heart Network is helping to address these challenges through the availability of a series of public use data sets specifically in pediatric populations.
Visit the Pediatric Heart Network Datasets page to review available PUDS on studies involving pediatric heart surgery, medication effectiveness, health and wellness, and heart function.