A Complete Guide to Cancer Registries

What is a Cancer Registry? 

A cancer registry is a database designed to collect, store, and manage information about people diagnosed with cancer. There are three different categories of registries: 

1. Population-Based Cancer Registries (PBCR): These registries collect data for all patients within a particular geographic location. There are currently 51 population-based registries in the U.S., and their data is often used for epidemiological studies and public health surveillance.
2. Hospital-Based Cancer Registries (HBCR): These registries operate within a specific organization and collect information on cancer patients the organization treats. There are over 1,800 in the U.S., and while they contribute data to population-based registries, the data is also used within the organization to optimize patient care and inform tumor board discussions.
3. Special Case Cancer Registries: These registries collect data about specific forms of cancer, enabling patients, doctors, and researchers to access more detailed information about the type of cancer with which they are concerned. 

What Data Does a Cancer Registry Capture? 

Cancer registries collect a range of data for each new incidence of cancer: 

• Patient Demographics: The patient’s name, age, gender, race, and geographical information 
• Disease Status: The recurrence or disease progression 
• Tumor Characteristics: Information about the patient’s tumor, including genomic information, biomarkers, and the stage of the illness 
• Treatment Modalities: The various options selected to treat the cancer patient, such as surgery, radiation therapy, chemotherapy, hormone therapy, and immunotherapy 

The patient’s status is then monitored for the remainder of their life – or until the age of 100. However, the level of detail and number of data points collected will vary between registries and sometimes individual cases. For example, researchers note that PBCRs capture fewer variables and data points than HBCRs. 

What is the Purpose of a Cancer Registry? 

There are a vast range of potential use cases for cancer registry data, but the most common ones include: 

1. Monitoring Cancer Incidence 

   Cancer registries provide essential data on cancer incidence across populations. By analyzing demographic and geographic patterns, public health officials can: 

   • Assist Screening: Registries are vital tools that assist with screening and enable researchers to evaluate the efficacy of cancer prevention programs. For example, data can be used to identify high-risk populations and adjust best practices to ensure key demographics receive early screening. Equally, registries can assess the impact of screening programs on cancer incidence, survival, and mortality. 
   • Identify Trends: Registry data can power large research projects to pinpoint trends in cancer. For example, recent research published in The Lancet utilized PBCR data from 2000-2019 to reveal that 50% of cancers studied had an increased incidence in young people. 
   • Highlight Disparities: Registry data provides a foundation for research into cancer disparities, helping to understand which groups are most susceptible to which forms of the illness – and which are not getting sufficient attention. It was recently discovered that black women in South Carolina had higher rates of breast cancer; registry data was used to develop the “Can Reach” initiative, which encouraged black women to get the treatment they needed.
     
     
2. Investigating Treatment Patterns 

   Registries collect information on treatment choices, sequences, and variations to understand how care is being delivered. This unlocks vital insights that can directly include: 

   • Treatment Efficacy: Registry data is invaluable in evaluating the efficacy of specific treatments, especially for demographics that are less likely to be involved in randomized control trials (RCTs). For example, researchers used a combination of PBCR and administrative claims information to assess the efficacy of colon cancer treatments. They found that adjuvant chemotherapy had limited efficacy on older patients with stage III colon cancer – a finding that has since been used to reconsider treatment strategies 
   • Access to Care: Researchers have used registry data to highlight a range of socioeconomic and logistical factors that hinder access to care and create unequal outcomes in cancer patients. Equally, hospital administrators may use PBCR data to determine where new hospital locations or clinics should be built – or which treatments would be most relevant to the local population.
     
     
3. Supporting Patient Care 

   Cancer registries enhance patient care by ensuring that providers have access to high-quality, standardized data: 

   • Care Coordination: Registries track patient treatments and outcomes across facilities, improving continuity of care. A wealth of research shows that registries can help to proactively plan care delivery for the timely provision of preventive and chronic disease care. 
   • Personalized Medicine: Registry data is increasingly used to share personalized cancer statistics tailored toward a patient’s personal and clinical characteristics. Research suggests that there is a strong demand amongst cancer survivors for such information. 

These factors have made cancer registries an essential resource for patients, researchers, and care providers for decades. But they are far from the only potential use cases for registry data – and the growing proliferation of novel technologies demonstrates this perfectly. 

The Role of Technology Within Cancer Registries 

Since the first U.S. cancer registry was established in 1926, the role and value of registries have evolved in tandem with technology. Manual paper-based methods were slowly replaced with digital collection, and this has slowly led to further innovations, from data visualization to the use of machine learning to mine data for hidden patterns.  

This is best illustrated through the evolving role of the cancer registrar. The concept of a “cancer registrar” as a distinct and specialized role is a relatively modern phenomenon. Registrars in the first cancer registries were often administrative staff with limited specialist training or skills related to the specific registry role. But this changed over the next 50 years. 

As registries became more widespread, both the volume and complexity of cancer data grew. Staff soon required extensive training and education to collect the data in a standardized format – and make proper use of it. 

In 1983, the National Cancer Registrars Association (NCRA) created the certified tumor registrar (CTR) credential– recognizing the distinct skillset involved in identifying and abstracting cancer patient data from multiple sources. Today, there are over 5,700 certified registrars, and the credential term was recently changed to Oncology Data Specialist (ODS). 

The role of an ODS demonstrates how pivotal information technology and data have become to registries. Rather than a “nice-to-have,” high levels of data literacy and analytic capabilities are now foundational to an effective registrar– a fact that is reshaping the role of cancer registries. 

Researchers have already noted that electronic health records (EHRs) improved the efficiency of registry programs; these new innovations will only take things further. However, in order to unlock these powerful new use cases, registry management will have to evolve, too.