The Future is Here: NCRA and the Cancer Registry Profession

Do you ever wonder how researchers understand the burden of cancer in the US? How public health officials learned

US? How public health officials learned where clusters of cancer diagnoses are located? Or how physicians learn what

located? Or how physicians learn what cancer treatments are the most effective? Cancer registars help to

effective? Cancer registars help to provide answers to these questions. They

capture a complete history, diagnosis, treatment, and health status for every cancer patient in the US.

The information is to identify to protect patient privacy. But in the aggregate, the data provides information to researchers, healthcare providers and public health officials to better

monitor and advance cancer treatments, conduct research and improve cancer prevention and screening programs. The information that registars collect is reported by law to state and federal

government agencies including the Centers for Disease Control and Prevention and the National Cancer Institute. The National Cancer Registars

Institute. The National Cancer Registars Association or NC represents over 7,000 cancer registry professionals. In 2024,

the association celebrated its 50th anniversary and embarked on a comprehensive strategic management process to help set the stage for the coming years.

>> When we talk about a disease such as cancer, we really need to know what that effect is. How many people are getting

effect is. How many people are getting it? How many people are dying from it?

it? How many people are dying from it?

Cancer registries actually give us that information. And it's from that

information. And it's from that information that we can figure out if we're doing good. It helps us make the medical care system more efficient such

that we're aiming at real issues and real problems and actually positively affecting people's lives.

>> Cancer registars are the experts in oncology data. They bring the clinical

oncology data. They bring the clinical perspective and the data perspective together. That cancer data is then

together. That cancer data is then reported to the state registries, the national registries and it's used to inform standards of care.

>> We look at every cancer case that enters a medical facility. So we encode data that really summarizes their entire cancer journey, what their family

origins are, what their demographics are, social history, the symptoms that preceded the diagnosis or led up to suspicion of the diagnosis. We would

document all of that information and then we follow them basically for the rest of their lives.

>> There are about 400 data items collected in the cancer registry abstract. Patient

demographics, how the cancer was worked up, characteristics of the cancer, where did it start, what kind of cancer is it, or the hisystologology, the stage of

disease, when the cancer was diagnosed, prognostic and predictive factors, information on treatment, and then ultimately the patient outcomes.

>> It's basically like creating an entire story of each cancer patient that enters that medical facility.

Modern cancer registries have been around. The first one was established in

around. The first one was established in Yale New Haven Hospital in 1926.

9 or 10 years later, the first populationbased registry was established also in Connecticut. Without cancer registries,

Connecticut. Without cancer registries, researchers, clinicians, public health departments would not have the information or the data that is needed to be able to make informed decisions

about prevention.

>> Since 1956, an entity known as the American College of Surgeons has required that a cancer

registry be a component of any hospital cancer program, seeking accreditation through them. The fields that were being

through them. The fields that were being collected were only like 10 and those were things that were just grabbed from medical records that were done on paper.

Now we're collecting hundreds of different data fields. We're collecting

them not only in code, but we're also substantiating them with text. Our job

has changed. We are not admin anymore.

>> We are more than just the data piece.

So NC was established in 1974 and then in 1983 NC established their council on certifications.

>> Recently they renamed the professional credential for cancer registars.

Previously it was the certified tumor registar which has been the name since its inception. This January it was

its inception. This January it was renamed to the oncology data specialist credential or ODS. Globally the ODS

credential is seen as the standard for what someone who does cancer registry whether data collection or data management or cancer registry operations to be able to do the important work of a

cancer registar. Renaming the

cancer registar. Renaming the professional credential was kind of vital so that we could really explain how important our role is in the fight

against cancer and also elevating what we do on a higher level. We have to have good highquality data in order to make

good highquality observations. The NC

has provided the training for collecting the data and keeping the data. I should

say >> the NC provides a a robust collection of education initiatives designed to keep us immersed in the most up-to-date and

sophisticated scientific data relating to every form of cancer. In order to adequately function, you really need an in-depth understanding of human anatomy and physiology

as well as an immersive understanding of all forms of cancer as well as the guidelines that govern treatment. So,

the NC provides webinars that are always available that are facilitated by leaders in our industry consistently updating us and refreshing us on how the

body functions. We need ongoing

body functions. We need ongoing education to kind of stay up todate on what's happening and then how we should be collecting data and what we should be

looking for.

>> The NCA offers several tools for ODS exam candidates. They have an exam prep

exam candidates. They have an exam prep webinar series. NC also publishes a

webinar series. NC also publishes a textbook, an online practice test, a live ODS exam preparation workshop.

Previously, we were kind of stuck trying to figure out how am I going to get this necessary experience in order to sit for my credentiing exam. Now, the NC has

these virtual and hybrid practicums where students can complete that required work online. They're able to abstract cases. They're able to learn

abstract cases. They're able to learn about what happens in hospital and central registries. I feel like that's

central registries. I feel like that's been a huge leap that gives more students the ability to fulfill these requirements for sitting for the credentiing exam.

NC does a lot of work with MER, the CDC, MPCR breast program accredititation, the rectal program accredititation, the cancer research program. There was a law

passed for counting all uh veterans cancers act. Without our partners, we

cancers act. Without our partners, we couldn't have made that possible.

>> There's a lot to be excited about with the profession and with NC. I think the future looks very promising.

>> Artificial intelligent technology will be at the forefront of our profession.

Cancer registars will perform fewer manual tasks and therefore they're going to need to master a variety of transferable skills. We are really

transferable skills. We are really embracing those technological advancements NLP large language models.

I really see informatics being the future of the profession and NC embracing that. As long as as cancer um

embracing that. As long as as cancer um is prevalent in society, there will be a need for registars to commit to helping

minimize uh the spread of cancer and um maximize the research initiatives going into combating cancer. The NC plays a

pivotal role um in that aspect in educating on what information to look for, what to collect uh so that these standard setters can continue evolving.

>> Advancements in the way cancer is diagnosed and treated are ever changing and bring hope to many cancer patients and their families. The hallmark of the cancer registry profession has been its

ability over the last 50 years to adapt and embrace these changes. The next 50 years will see technological advancements such as artificial intelligence and natural language

processing that will impact the work of registars.

Manual data collection will lessen and registars will have greater roles in ensuring data quality, analyzing and presenting cancer data and managing cancer registry informatics within their

facilities. The new vision is making

facilities. The new vision is making oncology data matter and the new mission is engage and advance our community through innovation, education,

credentiing, advocacy and alliances. And

the future that NC envisions is one where health care providers and policy makers seek the expertise of cancer registry professionals to help inform all aspects of cancer patient care and

related initiatives. Artificial

related initiatives. Artificial intelligence and technology will be at the forefront of our profession and we will be the drivers of this change. As

cancer registars perform fewer manual tasks, a variety of transferable skills necessary for success in the changing oncology community will need to be

mastered and the cancer registar will be respected and compensated for their professional role in interpreting the cancer patients journey into vital oncology data. NC is committed to

oncology data. NC is committed to leading efforts to manage the transition that lays ahead.