Research Feature: Common Data Elements


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Fight Colorectal Cancer’s (Fight CRC) Early-Age Onset Research Workgroup is taking action to understand why rates of colorectal cancer are increasing rapidly among patients under age 50

Beginning in 2019, Fight CRC convened a group of global experts, including researchers, clinicians, and patient advocates to work together in the effort to understand the causes of EAO CRC and improve care for EAO CRC patients. 

The group identified that studies are collecting data on potential risk factors in different ways, making it difficult to share data and make conclusions about the results. This pushed them to seek improvement by developing a common data elements tool that could be used across studies.

Fight CRC Medical Advisory Board and EAO CRC Workgroup member Caitlin Murphy, Phd, MPH shared an overview of the tool and its value.

Tell us about the common data elements project. How can this tool be used to advance EAO CRC research?

As researchers have started to tackle understanding the causes of EAO CRC, we noticed differences in how researchers measure risk factors. For example, diet can be measured with many different questionnaires that range in length from only a few to hundreds of questions and look at different combinations of dietary patterns (such as daily or weekly consumption of fruit and vegetables, daily products, etc.). Diet can also be measured at different times in life, like childhood or adulthood. 

When researchers use different ways to measure the same thing, it makes it challenging to interpret results and understand if these types of factors have an affect on an individual developing EAO CRC. We wanted to make it easier to compare and summarize results across studies by providing a list of data elements to include in research projects. This will help us identify the most important risk factors of EAO CRC.

What progress has been made on the project?

We have combed the literature and identified a core set of validated measures. Validated measures are survey questions that have been tested in other studies in order to ensure that the question is measuring what it is supposed to measure. 

These measures cover topics like chronic conditions, medication use, and physical activity. We’ve ranked each measure using a structured process so that researchers can choose from a shorter set of priority questions to use in their studies or add additional measures from a longer, more comprehensive set.

What are the next steps for completing and implementing the tool?

We are gathering feedback on a few of the more complex measures (like diet!) with other members of Fight CRC's Early-Age Onset Workgroup before finalizing the tool and sharing with others. Once it is finalized, we will make it available to the public so the research community around the world all has access to the same tool.

What is one takeaway you would like the patient community to know?

Using common data elements across studies will help us quickly and more efficiently identify risk factors of EAO CRC.

Interested in learning more about Fight CRC’s research efforts? 

  • Join the Fight CRC EAO CRC Workgroup and other researchers, clinicians, and patient advocates across the globe on June 24 and 25 for an interactive Rally on Research focused on EAO CRC. Registration is FREE! 

EAO CRC Workgroup members will be providing an update on their projects including the common data elements tool, and we’ll be helping answer burning questions, such as: 

  • What research is underway now? 
  • What’s the path moving forward? 
  • How can clinicians provide great care? 
  • How can patients share their experiences to influence future plans? 
  • How can you join the international research efforts and be part of the community tackling this issue?