Research and

Cancer Registry Collaboration

Offers More Patients Hope

Is your cancer registry involved with Clinical Trials in your cancer center?  Does the clinical trial department understand the value that cancer registry data can hold for them? These are questions we frequently ask and engage in conversations about with our clients. Many times, the power of the cancer registry is overlooked.

In Oncology, there are several types of clinical trials and the data collected in the registry can hold a variety of uses depending on the type of trial:

Prevention Trials – This type of participation generally focuses on patients that do not currently have cancer, but may be at a high risk due to family history or other risk factors for a certain type of cancer.

Screening Trials – As with prevention trials, screening trial participation targets patients at risk for developing cancer. The screenings may include a variety of diagnostic tests to detect cancer early. Researchers may analyze the benefits of detecting certain types of cancer early. A good example of a successful screening is a colonoscopy.

Treatment Trials – Treatment trials are usually done in phases. These trials can indicate the safety and possible side effects of new drug regimens. In later phases of treatment trials, researchers may analyze if certain treatments work better than others.

Other types of trials include cohort studies, case control studies and cross section studies and randomized trials as well as other types.

One thing that all clinical trials have in common is the need to identify patients that are eligible to participate. This is an area where the cancer registry can provide valuable information. Studies are revealing that “real-world” data produces good results to identify patients. There are several sources that can be used: EMR, insurance claims, pharmaceutical data, etc. Many researchers are beginning to look to the registry to obtain this data. In the registry, the level of data collected is the “big picture” of the patient’s cancer journey that includes demographics, history and comorbidities, screening information, diagnostic testing, stage of cancer, all treatment, recurrence and outcome monitoring.

The level of detail and granularity of the data is what attracts researchers to the cancer registry. Registry software not only has the ability to collect the data, but to select certain patient characteristics and eligibility status and export the data for analysis and/or combine with other data sources into a data warehouse for extensive analysis. Another factor that draws researchers to the registry is the ability to automate the importation of cancer cases into the database. This provides for concurrent reporting, which is extremely important for clinical trial eligibility and selection. If your facility’s research and clinical trials departments are unaware of the wealth of information that can be provided on this front, then it is time to market yourself and the cancer registry. With your knowledge and expertise in data collection and analysis, you can help the strategic direction of the cancer program!

Check out these interesting articles on the utilization of oncology data and data warehousing in clinical trials:

Real-world Data for Clinical Evidence Generation in Oncology

An Integrated Oncology Data Warehouse for Clinical Decision Support and Complex Patient Cohort Indentification in a Hybrid Cancer Center