What is a Central Cancer Registry?
A central cancer registry is a data system that collects, stores, analyzes,
and interprets cancer data from a defined geographical area. The basic
information comes from patients' medical records. All names and data
that could identify a patient are kept confidential.
For every cancer case, the registry includes: When the cancer was diagnosed
Where the cancer occurred in the body How far advanced the cancer was
when it was found The specific type of cancer The patient's first course
of treatment Demographics like age, race, gender and county of residence.
Where does the information on cancer cases come from?
More than 80% of cases are reported electronically from hospitals with
existing cancer registries. The remaining information comes from non-registry
hospitals (hospitals without cancer registries), independent pathology
laboratories, freestanding treatment centers, and physician offices.
SCCCR staff collects information from non-registry hospitals, independent
pathology labs, and freestanding treatment centers. Physician offices
are asked to report information only on their cancer cases not referred
to a hospital setting.
What about patients who are diagnosed or treated out of state, does
the registry get these?
Yes. The SCCCR has case sharing agreements with 16 states, including
all the bordering states. Therefore, if a SC resident is diagnosed or
treated in one of these 16 states, the information about that patient
is reported to the SCCCR.
What types of cancer are reported to the central cancer registry?
All cancers diagnosed on or after January 1, 1996 among SC residents.
Basal and squamous cell carcinomas of the skin are not reported. Basal
and squamous cell carcinomas of the genital sites are reported. Carcinoma
in situ cancers of the cervix are not reported.
Is the cancer registry data of good quality?
Yes. All cancer registry data goes through a stringent quality control
process. Currently the SCCCR visually reviews 100% of its data, and
a series of computerized data edits are run on all data. The SCCCR also
conducts quality control audits of its data, including case-finding,
coding reliability, and reabstracting audits.
In addition, the SCCCR participated in a national data quality audit in
March 2000. The audit assessed the level of data quality and case completeness
of cancer reporting in the SCCCR. The SCCCR was found to have a completeness
rate of 96.9% and an accuracy rate of 96.4%, both of which exceeded the
national standard of 95%. Data from the SCCCR are submitted to the
North American Association of Central Cancer Registries (NAACCR) for an
evaluation of completeness, accuracy, and timeliness each year since a
formal certification process was established in 1997. In each year (1997,
1998, 1999, 2000), the SCCCR has received NAACCR certification.
What are the benefits of a Central Cancer Registry?
A Central Cancer Registry determines the number, types, and severity
of new cancer cases diagnosed each year in SC Studies trends of how
often cancers occur in a defined area Identifies high risk groups which
need to be targeted for cancer education, prevention, and screening
Provides information necessary to answer public questions about cancer
in the community Investigates the possible occurrence of more cancer
cases than normal in geographical area Provides information for scientific
and medical research about cancer in SC.
What are the confidentiality rules in regards to the Cancer Registry?
In 1996 the U.S. Congress passed the Health Insurance Portability and
Accountability Act or HIPAA, requiring uniform federal privacy protections
for individually identifiable health information. HIPAA allows for the
reporting of identifiable cancer data to public health entities. Because
the SCCCR falls under the definition of a public health entity, HIPAA
allows facilities and physician practices to continue to report data
to the SCCCR in compliance with state law.
Any information that can identify the cancer patient is kept confidential
in accordance with the administrative policy of the Department of Environmental
Control. Only the individual patient or an authorized representative is
able to open the information for inspection.
Why doesn't the mapping page map rates less than one?
The maps generated take the rate and rounds it up or down according
to the rate. Rates above .50 are coded into the 1-4 group and rates
less than .50 are coded as a zero. To get the real rates please generate
the frequency and rate in the "create a table" page selecting all counties
and other characteristics as desired.
If the legend on the map has label 1-4 and 4-8 and the frequency
or rate is 4.0, which level will this frequency or rate fall into?
Frequency or rates equaling the dividing point in the legend fall into
the larger of the categories. A frequency or rate of 4.0 will fall into
the 4-8 category.
Why do I get a N/A sometimes for the rate?
This is due to missing denominators in the rate calculation. This will
always occur for the unknown category, marital status, and ethnicity
when live birth is the indicator chosen.
Other times this will occur when there were no denominator (live births)
for the selection chosen, the frequency of the characteristic chosen
will always be zero in this case and the rate can be seen as zero.
Why do I get N/A sometimes for the 95% confidence intervals?
Users will see an N/A for the 95% confidence intervals when the rate
is either N/A or equals zero.
Who do I contact for more analysis?
Please see the S.C.
Central Cancer Registry Homepage for further information.