Form CDC.0920-0706 NPCR Program Evaluation Instrument (Online)

National Program of Cancer Registries Program Evaluation Instrument

0920-0706 Attachment 3B_ NPCR PEI Survey -Web Version_ FinalRevision_08102021

NPCR - Program Evaluation Instrument (NPCR-PEI) (Online)

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2022 NPCR
Program
Evaluation
Instrument
Form Approved
OMB NO. 0920-0706
Exp. Date XX/XX/XXXX

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Program Evaluation Instrument
Purpose Statement

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The NPCR Program Evaluation Instrument (PEI) is a web-based survey instrument designed to evaluate NPCR-funded
registries’ operational attributes and their progress towards meeting program standards. The PEI also provides information
about advanced activities and "Survey Feedback" assists CDC in improving the survey instrument.
Based on CDC’s Updated Guidelines for Evaluating Public Health Surveillance Systems, the PEI monitors the integration of
surveillance, registry operations and health information systems, the utilization of established data standards, and the electronic
exchange of health data. Data provided by this report can be used for public health action, program planning and evaluation,
and research hypothesis formulation.
Specific knowledge about operational activities in which NPCR registries are engaged is used to provide valuable insight to
CDC regarding programmatic efficiencies/deficiencies that have contributed to the success/challenges of the NPCR. The
results of this instrument inform CDC and NPCR Program Consultants where technical assistance is most needed in order to
continue to improve and enhance the NPCR.
Many of the questions in the 2022 PEI provide baseline data that can be used to measure compliance with the NPCR Program
Standard. Using all available information as of December 31, 2021, the appropriate Central Cancer Registry (CCR) staff
should complete the PEI.
Deadline for completion: December 31, 2022

Enter The Survey
Burden Statement
Public reporting burden of this collection of information varies from 1.5 to 2.5 hours with an estimated average of 2 hours per
response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data
needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is
not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments
regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this
burden to CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-741, Atlanta, Georgia 30333; ATTN: PRA
(0920-0706).
 
This site was developed through a contract with the Centers for Disease Control and Prevention (CDC).
  

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2022 - Program Evaluation Instrument

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      Survey

Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data
Staffing

Export & Print

Administrative Data
State/Territory

SA

NPCR
reference year

1995
1995

Registry
reference year

1981
1981

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional
Validation

Registry
Program
Director

Sample

Cooperative
17-1701- 
Agreement #
Most Current
$ 

Grant Award
Amount
CDC Program
Consultant
Your name
Title

Review
Save and Logout

Phone
number
Status

In Progress

Date
Completed

07/18/2021

Email
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Survey: Administrative Data PEI

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Staffing (page 1 of 2)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

Data Use
Collaboration
Advanced Activities

The following questions use the concept of a “Full-time Equivalent” also
known as an “FTE.” In each question you will be asked to report the total
number of FTEs (FTE count). To do this, please convert each position to the
appropriate FTE using the guidelines below, rounding each position to the
nearest quarter of an FTE (e.g., 34 hrs/week would convert to 0.75 FTE,
whereas 35 hrs/week would convert to 1.0 FTE):
0.25 FTE = 10 hrs/week
0.50 FTE = 20 hrs/week
0.75 FTE = 30 hrs/week
1.00 FTE = 40 hrs/week
Then add each converted position for the total number of FTEs.
1. On December 31, 2021, how many total FTE central cancer registry (CCR)
staff positions were funded? You may include positions outside the registry
ONLY IF the registry pays a portion of the salary. Remember to use the
calculation method above when computing partial FTEs.

Survey Feedback
Optional

Page 1 Staffing
Funding Category

Validation

Review
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Number of NPCR-funded
(non-contracted) FTE
positions

Number of NPCR-funded,
Contracted FTE positions

Number of State-funded

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Total Count FTEs
Filled

Vacant

Survey: Staffing PEI

(non-contracted) FTE
positions

Number of State-funded,
Contracted FTE positions

Number of non-contracted
FTE positions funded by
other sources
Number of Contracted FTE
positions funded by other
sources
0.00

0.00

Totals

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Staffing (page 2 of 2)

Staffing

Legislative Authority
Administration

2. Please Indicate number of FTEs in the positions listed below. Please include both filled and vacant, as well
as time contributed by non-registry staff (e.g. chronic disease epidemiologist), regardless of funding, in your
total FTE count. Use the FTE calculation method as described previously. Please note CTR credentials
may be held by several registry positions and should be counted accordingly.

Reporting Completeness

Data Exchange

Page 2 Staffing
Position (FTE or percentage of FTE)

Data Content And Format

Data Quality Assurance
Data Use

Principal Investigator
Program Director

Collaboration
Advanced Activities

Program Manager

Survey Feedback

Budget Analyst
Optional
Validation

CTR Quality Control Staff

Review

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Non-CTR Quality Control Staff
CTR Education /Training Staff
Epidemiologists
Statisticians
Computer / IT

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Total Count FTEs
Filled

Vacant

Survey: Staffing PEI

GIS Specialists
Other staff, specify
0.00

Total Number of Staff

0.00

Total Number CTRs (of total number
of staff)
Staffing Section Comments (You may add comments regarding your responses in the “Staffing” section
above.)

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Survey: Legislation PEI

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Legislation

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange

Data Content And Format

Data Quality Assurance

3. Have any law/regulations been revised to address cancer reporting in the past two years?
Yes
No
Please describe:
If there are plans for revisions in the next two years, please provide comment in box below.
Legislation Section Comments(You may add comments regarding your responses and/or any anticipated
legislative barriers related to the "Legislation” section above.)

Data Use
Collaboration
Advanced Activities
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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Administration (page 1 of 2)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

4. Does your CCR maintain an operational manual describing registry
operations, policies and procedures that, at a minimum, contains the
following? 1. Registry collects and submits data for all reportable cancers
and benign neoplasms, including at a minimum, primary site, histology,
behavior, date of diagnosis, race and ethnicity, age at diagnosis, gender,
stage at diagnosis, and first course of treatment, according to CDC
specifications and other information required by CDC. 2. For all CDCrequired reportable cases, the registry collects/derives all required data items
using standard codes prescribed by CDC. 3. Registry participates in all
analytic datasets and Web-based data query systems, according to the
annual NPCR CSS Data Release Policy.
Check all that apply.

Data Use

Page 4 Administration

Collaboration

Reporting laws/regulations

Yes

No

Advanced Activities

List of reportable diagnoses

Yes

No

List of required data items

Yes

No

Survey Feedback
Optional
Validation

Review
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  Data processing operational procedure for (Check all that apply):
  a. Monitoring timeliness of reporting

Yes

No

  b. Receipt of data

Yes

No

  c. Database management including a
description of the registry operating
system(software)

Yes

No

  d. Conducting death certificate clearance

Yes

No

Procedure for implementing and maintaining a quality assurance/control
program including (check all that apply, e-h):

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Survey: Administration PEI

e. Conducting follow-back to reporting
facilities on quality assurance issues

Yes

No

Yes

No

Yes

No

Yes

No

Procedures for conducting data exchange
including a list of states with which casesharing agreements are in place

Yes

No

Procedures for conducting data linkages

Yes

No

Procedures for ensuring confidentiality and
data security including disaster planning

Yes

No

Procedures for data release including
access to and disclosure of information

Yes

No

Procedures for maintaining and updating
the operational manual

Yes

No

f. Conducting record consolidation
g. Maintaining detailed documentation of
all quality assurance operations
h. Education and Training

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Administration (page 2 of 2)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange

5. Does your CCR produce reports that are used to monitor the registry operations and database, including
processes and activities? Check all that apply.
Quality control report (central registry)
Quality control reports for each facility
Data completeness report for each facility
Timeliness of data report for each facility
Data workflow report

Data Content And Format

All of the above

Data Quality Assurance

Other, specify:

Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional

None of the above
6. Does your CCR have an abstracting and coding manual that is provided for use by all reporting sources?
Yes
No
Administration Section Comments (You may add comments regarding your responses in the “Administration”
section above.)

Validation
Review

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Reporting Completeness (page 1 of 3)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

Data Use
Collaboration

7. Hospital and Pathology Laboratory Reporting:
Please list the number, by type, that are required to report and the number that
were compliant with reporting at the end of 2021. Also report the number reporting
electronically. (e.g. in a standardized format that minimizes the need for manual
data entry).
"Hospital cancer registry" is defined as one (single or joint institution) that
collects data to be used internally and that would continue to do so
regardless of the central cancer registry requirements to collect and report
cancer data.
For those types of Hospitals and Pathology Labs which are not applicable to
your state/territory (e.g., IHS Hospitals), record zero (0) in "Number
Required to Report" and record zero (0) in "Number Compliant with
Reporting". In these instances, "Number Reporting Electronically" should
also be recorded as zero (0).

Advanced Activities

Page 6 Reporting Completeness

Survey Feedback

Number
Required to
Report
(Denominator)

Optional
Validation

Review
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HOSPITALS
Hospitals with a cancer
registry (non-federal)
Hospitals without a
cancer registry (nonfederal)
CoC Hospitals#

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Number
Compliant with
Reporting* at
the end of 2022

Number
Reporting
Electronically**

Survey: Reporting Completeness PEI

VA Hospitals#

IHS Hospitals#

Tribal Hospitals#

Physician Offices#
PATHOLOGY LABORATORIES
In-state independent
labs
Out-of-state
independent labs
Other, specify

0

TOTAL

0

0

*ALL facilities that report -- not only those reporting in a timely manner
**Electronic Reporting is the collection and transfer of data from source documents by
hospitals, physician offices, clinics or laboratories in a standardized, coded format that
does not require manual data entry at the Central Cancer Registry (CCR) level to create
an abstracted record.
# Although these groups are not "required" to report in accordance with state law,
please indicate the number of known facilities that diagnose or treat cancer for residents
of your state.
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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Reporting Completeness (page 2 of 3)

Staffing

Legislative Authority

8. Do you require that non-analytic (classes 30-38) cases be reported to your
CCR?

Administration

Yes

Reporting Completeness

No

Data Exchange

9. Do you receive data from the Department of Defense's Automated Central
Tumor Registry(ACTUR) dataset? (If No, please skip to Question 12)

Data Content And Format

Yes

Data Quality Assurance

No

Data Use
Collaboration
Advanced Activities

Survey Feedback

10. If Yes, how often? Check only one.
Quarterly
Every 6 months
Annually
Other, describe

Optional
Validation

11. If Yes, have these data proven to be helpful in finding new incident cases?

Review

Yes

Save and Logout

No
12. If No, why not? Check all that apply.
Data are incomplete.
Data are not in the proper format for us to consolidate with existing records.
We don't have time to deal with it.
Other, specify:

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Survey: Reporting Completeness PEI

13a. Do you receive data directly from the Veterans Administration's cancer
registries in your state?
Yes
No
13b. How many VA facilities currently report your CCR indirectly from the VA central
cancer registry in Washington, DC?
Number of facilities:
14. Based on historical data, how many cases per diagnosis year do you estimate are
missed (i.e., never received) by your CCR because of non-reporting by VA facilities?
Number of cases missed:

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      Survey

Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Reporting Completeness (page 3 of 3)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange

Data Content And Format

Data Quality Assurance
Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional
Validation

15a. Industrial or Occupational History Data
From what sources are you able to ROUTINELY collect information on industrial or occupational history (without
seeking additional data sources for only these variables)? Check all that apply.
Administrative records (e.g. billing or claims databases, or patient forms that are not part of the medical
record)
Medical records
Death certificate linkages
Other, specify:
Do not collect information on industrial or occupational history
15b. Do you conduct any ADDITIONAL activities (e.g. linkages with external databases) to collect or
improve upon industrial or occupational history information?
Yes
No
Please describe:
Please indicate how the following factors influenced the completeness and timeliness of your CCR’s 12month data submission:
Page 8 Reporting Completeness

Review

Contributing Factor

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Laws and Rules

Fines and Penalties

Outsourcing and contracting

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Negative Factor

Both Contributing
and Negative
Factor

Survey: Reporting Completeness PEI

Interstate data exchange

Other factors, specify
Reporting Completeness Section Comments (You may add comments regarding your responses in the
“Reporting Completeness” section above.)

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Survey
      Survey

Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Data Exchange

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange

Data Content And Format

Data Quality Assurance
Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional
Validation
Review

Save and Logout

16. Does your CCR use and require the following standardized, CDC-recommended data formats for the
electronic exchange of cancer data from reporting sources:
a. Hospital Reports (The NAACCR record layout version specified in Standards for Cancer Registries
Volume II: Data Standards and Data Dictionary)?
Yes
No
b. Pathology reports (NAACCR Standards for Cancer Registries Volume V: Pathology Laboratory Electronic
Reporting)?
Yes
No
Not Applicable, not receiving electronic pathology reports
c. Ambulatory healthcare providers using electronic health records (Implementation Guide for Ambulatory
Healthcare Provider Reporting to Central Cancer Registries)
Yes
No
Not Applicable, not receiving Ambulatory healthcare provider reports
17. Do your interstate data exchange procedures meet the following minimum criteria?
a. Within 12 months of the close of the diagnosis year, your CCR exchanges that year's data with other
central cancer registries where a data-exchange agreement is in place:
Yes
No
b. Your CCR collects data on all patients diagnosed and/or receiving first course of treatment in your
registry’s state/territory regardless of residency:
Yes
No
c. The recommended frequency of data exchange is at least two times per year. Your CCR exchanges data
at the following frequency:

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Survey: Data Exchange PEI

Annually
Biannually (two times per year)
Other, specify

d. Exchange agreements are in place with all bordering central cancer registries:
Yes, with all bordering CCRs plus other non-adjacent CCRs
Yes, with all bordering CCRs but no others
Yes, with some bordering CCRs
Yes, Includes National Interstate Data Exchange Agreement
No, no exchange agreements in place with neighboring states, but some are in place with nonneighboring states
No, no exchange agreements in place
List all existing CCR agreements here:
e. What type of records do you transmit for interstate exchange? Check all that apply.
Consolidated cases
Source records with text
Source records without text
f. Does it include all cases not exchanged previously?
Yes
No
g. Are NPCR core data items included in the dataset submitted to other states?
Yes
No
h. Do 99% of data submitted to other states pass an NPCR-prescribed set of standard edits?
Yes
No
i. Are exchanged data transmitted via a secure encrypted Internet-based system?
Yes
No
j. Is the standardized, NPCR-recommended data exchange format used to transmit data to other central
cancer registries and CDC (The current NAACCR record layout version specified in Standards for Cancer
Registries Volume II: Data Standards and Data Dictionary):
Yes
No
18. What type(s) of secure encrypted Internet-based system is used for interstate data exchange? Check all that
apply.
PHINMS
Secure FTP
WebPlus
HTTPS
N-IDEAS

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Survey: Data Exchange PEI

Secure encrypted e-mail
Other, specify:
Data Exchange Section Comments (You may add comments regarding your responses in the “Data Exchange”
section above.)

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2022 - Program Evaluation Instrument

Survey
      Survey

Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Data Content And Format

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange

Data Content And Format

Data Quality Assurance
Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional
Validation
Review

Save and Logout

19. Is your CCR able to receive secure, encrypted cancer abstract data from reporting sources via the
Internet, FTP, Email, etc?
Yes
Currently being developed and/or implemented
No, not able to receive
No, able to receive, but not receiving
20. What is the primary software system used to process and manage cancer data in your CCR? Check
only one.
Commercial Vendor
In-House Software
CRS Plus
SEER DMS
21. Which of the following Registry Plus programs do you use? Check all that apply.
Abstract Plus
Prep Plus
CRS Plus
Link Plus
Web Plus
eMaRC Plus
CDA Validation Plus
All of the above
None of the above
Data Content and Format Section Comments (You may add comments regarding your responses in the “Data
Content and Format” section above.)

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Data Quality Assurance (page 1 of 3)

Staffing

Legislative Authority

22. Please respond to each of the following statements to describe your CCR's
quality assurance program:

Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional

Page 11 Data Quality Assurance
A designated CTR is responsible for the quality
assurance program

Yes

No

Qualified, experienced CTRs conduct quality
assurance activities

Yes

No

At least once every 5 years, case-finding and/or
re-abstracting audits from a sampling of source
documents are conducted for each hospitalbased reporting facility. This may include
external audits (NPCR/SEER)

Yes

No

Data consolidation procedures are performed
consistently from all source records

Yes

No

Procedures are in place for follow-back to
reporting facilities on quality issues

Yes

No

23. Does your CCR have a designated CTR education/training coordinator, to
provide training to CCR staff and reporting sources to ensure high quality data?

Validation

Yes

Review

No

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24. In the past year, which of the following type of quality control audits or activities did
your CCR conduct? Check all that apply.
Case finding
Re-abstracting
Re-coding
Visual editing
Data Item Consolidation

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Survey: Data Quality Assurance PEI

Other, specify:
25. Although death certificate processes require matches on all underlying causes
of death, does your CCR match all causes of death against your registry data to
identify a reportable cancer?
Yes
No
26. During the death certificate linkage, does your CCR match by tumor
(site/histology) and not just by patient identifying information?
Yes
No

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2022 - Program Evaluation Instrument

Survey
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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Data Quality Assurance (page 2 of 3)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

27a. Does your CCR update the CCR database following death certificate
matching within 3 months of linkage?
Death information (vital
status and cause of death)

Yes

No

Missing demographic
information

Yes

No

27b. If Yes, what percentage(s) of the updates are performed manually or
electronically? (Provide best estimate; may be some overlap between
automation and manual review.)
Page 12 Data Quality Assurance

Data Use

Manually (%)

Electronically (%)

Collaboration
Advanced Activities

Survey Feedback

Death information
Demographic Information

Optional
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28. Does your CCR perform record consolidation on the following?
Patient data group

Electronic

Manual

Both

Neither

Treatment data group

Electronic

Manual

Both

Neither

Follow-up data group

Electronic

Manual

Both

Neither

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2022 - Program Evaluation Instrument

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Data Quality Assurance (page 3 of 3)

Staffing

Legislative Authority

29a. Does your CCR provide an edit set to your reporting facilities and/or vendors for use prior to data
submissions to your CCR?

Administration

Yes

Reporting Completeness

No

Data Exchange

Data Content And Format

Data Quality Assurance
Data Use

29b. If Yes, are facilities required to run prescribed edits prior to their data submission to your CCR?
Yes
No
29c. Does your CCR have an established threshold for percent of records passing edits on incoming
submissions?

Collaboration

Yes

Advanced Activities

No

Survey Feedback
Optional

29d. If Yes what is the threshold?
100%
90% or greater

Validation

80% or greater

Review

Less than 80%

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29e. How often does your CCR provide feedback to reporting facilities on the quality, completeness, and
timeliness of their data?
Quarterly
Every 6 months
Annually
Other, describe

Data Quality Assurance Section Comments (You may add comments regarding your responses in the “Data
Quality Assurance” section above.)

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Survey: Data Use PEI

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2022 - Program Evaluation Instrument

Survey
      Survey

Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Data Use (page 1 of 3)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional
Validation

30. Within 12 months of the end of the diagnosis year with data that are 90%
complete, did your CCR calculate incidence count, rates or proportions in an
electronic data file or report for the diagnosis year for Surveillance Epidemiology
and End Results (SEER) site groups as a preliminary monitor of the top cancer
sites within your state/territory?
Yes
No
31a. Within 24 months of the end of the diagnosis year with data that are 95%
complete, did your CCR calculate incidence rates, counts or proportions in an
electronic data file or report? (The report should include, at a minimum, ageadjusted incidence rates, age-adjusted mortality rates, and stage at diagnosis for
the diagnosis year for SEER site groups, and, where applicable, stratified by sex,
race, ethnicity, and geographic area.
Yes
No
31b. Within 24 months of the end of the diagnosis year with data that are 95%
complete, does the CCR create biennial reports providing data on stage and
incidence by geographic area with an emphasis on screening-amenable cancers
and cancers associated with modifiable risk factors (e.g., tobacco, obesity, HPV).

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Yes

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No
31c. If Yes, indicate what information was included in the report: Check all that apply.
Screening-amenable Cancers
Tobacco-related Cancers
Obesity-related Cancers
HPV-related Cancers

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Survey: Data Use PEI

All the above
Other
32a. What is the most current diagnosis year a data file or report is available to the
public?
Most current diagnosis year:
32b. In what format is this report available? Check all that apply.
Hard (paper) copy
Electronic word-processed file
Web page/query system
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2022 - Program Evaluation Instrument

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Glossary

Survey Progress:

Administrative Data

Export & Print

Data Use (page 2 of 3)

Staffing

Legislative Authority

33. Indicate the number of times the CCR, state health department, or its designee used registry data for
planning and evaluation of cancer control objectives for each category in the table below:

Administration

Page 15 Data Use
Data Use Category

Reporting Completeness

Number per Year

Data Exchange

Comprehensive cancer control
detailed incidence/mortality estimates

Data Content And Format

Detailed incidence/mortality by stage
and geographic area

Data Quality Assurance
Data Use
Collaboration
Advanced Activities

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Validation
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Collaboration, as defined in DP171701, with cancer screening programs
for breast, colorectal, and cervical
cancer
Health event investigation(s)
Needs assessment/program planning
(e. g. Community Cancer Profiles)
Program evaluation
Epidemiologic studies
Other, describe
34a. Have any of the above uses of data been included in a journal publication in the last two years?
Yes
No
34b. If “Yes”, please list the citation(s) in the space provided:

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2022 - Program Evaluation Instrument

Survey
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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Data Use (page 3 of 3)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange

35. During the past year, for which areas of registry data utilization did your CCR acknowledge CDC-NPCR
funding, as required in the Notice of Cooperative Agreement Award? Check all that apply.
Publications (e.g.; journal articles, annual report, other reports)
Web site
Presentations, posters
Release of data
Education meeting, training program, conference

Data Content And Format

Data Quality Assurance
Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional

Press releases, statements
Requests for proposals, bid solicitations
Data System
None
Other, specify:
36. Does your CCR use United States Cancer Statistics (USCS) data when performing comparative
analyses?
Yes
No Explain:

Validation
Review

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Data Use Section Comments (You may add comments regarding your responses in the “Data Use” section
above.)

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Survey: Collaborative Relationships PEI

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2022 - Program Evaluation Instrument

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Collaborative Relationships (page 1 of 2)

Staffing

Legislative Authority
Administration

37a. Has your CCR established and regularly convened an advisory committee to
assist in building consensus, cooperation, and planning for the registry? (Advisory
committee structures may include a CCC Program committee or an advocacy
group).

Reporting Completeness

Yes

Data Exchange

No

Data Content And Format
Data Quality Assurance

Data Use

37b. If Yes, the Advisory Committee includes representation from: Check all that
apply.
Representatives from all cancer prevention and control components
Vital Statistics
Hospital cancer registrars

Collaboration
Advanced Activities

Survey Feedback
Optional
Validation

Review

American Cancer Society
Clinical-laboratory personnel
Pathologists
Clinicians
Researchers
Oncologists
American College of Surgeons
All of the above
Other, specify:

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37c. If you have an Advisory Committee, how often does this group convene,
including in-person and teleconferences? Check only one.
Quarterly
Annually
Biannually

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Survey: Collaborative Relationships PEI

Other, specify:

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2022 - Program Evaluation Instrument

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Administrative Data

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Collaborative Relationships (page 2 of 2)

Staffing

Legislative Authority
Administration
Reporting Completeness

38. In what ways does your CCR collaborate with your state's National Breast and Cervical Cancer Early
Detection Program (NBCCEDP) and National Comprehensive Cancer Control Program (NCCCP)? Check all
that apply.
Provides assistance in staging NBCCEDP cases
Regular meetings with NBCCEDP, NCCCP and chronic disease departmental staff

Data Exchange

Provides training/technical assistance to NBCCEDP, NCCCP and chronic disease staff

Data Content And Format

Provides technical material for publications to NBCCEDP, NCCCP and chronic disease

Data Quality Assurance
Data Use
Collaboration

Provides data to NBCCEDP, NCCCP and chronic disease
Provides subject matter expertise to NBCCEDP, NCCCP and chronic disease
Data linkage
Partner on collaborative projects
All of the above
Other, specify:

Advanced Activities

Survey Feedback
Optional
Validation
Review

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None of the above, explain
39. With which other Department of Health programs does your CCR collaborate? Check all that apply.
Tobacco Control
Oral Health
Diabetes
Heart Disease and Stroke Prevention
Asthma
Physical Activity and Nutrition/Obesity
Radiation Control
Environmental Health
Infectious disease (HIV/AIDS, HPV, hepatitis)
Immunization
All of the above
Other, specify:
Collaborative Relationship Section Comments (You may add comments regarding your responses in the
“Collaborative Relationship” section above.)

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Survey: Advanced Activities PEI

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2022 - Program Evaluation Instrument

Survey
      Survey

Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Advanced Activities (page 1 of 3)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

Data Use

As the capacity of central cancer registries to collect and maintain population-based
cancer data increases, so does their ability to engage in new activities designed to
improve the completeness, timeliness, quality, and use of their data. In this section, we
are interested in learning more about your "advanced activities."
40. If your CCR receives electronic pathology reports, in which format are these
received? Check all that apply.
NAACCR, HL7 Format (Volume V), Version 2.x
NAACCR, Pipe Delimited Format (Volume V), Version 2.x
NAACCR, HL7 Format (NAACCR Volume II, Version 11, Chapter VI)
NAACCR, Pipe Delimited Format (NAACCR Volume II, Version 10,Chapter VI)
Other, specify:

Collaboration
Advanced Activities

Survey Feedback

Not applicable
41. For which of the following cancer surveillance needs has your CCR been in contact
with your Health Department's PHIN / NEDSS staff? Check all that apply.
Pathology laboratory reporting

Optional
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Physician disease reporting
Other healthcare data reporting. Describe
None of the above
42. Does your CCR conduct at least one of the following advanced activities? Check
all that apply.
Survival analysis
Quality of care studies
Clinical Studies
Publication of research studies using registry data
Geo-coding to latitude and longitude to enable mapping

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Survey: Advanced Activities PEI

Other healthcare data reporting. Describe:
Other innovative uses of registry data such as Survivorship Care Plan. Describe
None of the above
43. Does your registry have a system in place for early case capture (rapid case
ascertainment)?
Yes
No
43a. If Yes, is early case capture performed for:
All cases
Subset of cases (e.g. Pediatric Cancer)
Special Studies
Other, specify:
43b. If yes, within what time frame are cases reported?
30 days
60 days
Study dependent, specify
Other, specify

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2022 - Program Evaluation Instrument

Survey
      Survey

Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Advanced Activities (page 2 of 3)

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format

44. How often does your CCR link to the National Death Index (NDI)? Please
check only one. (If never, skip to question 45.)
Every Year
Every Other Year
Every 3-5 Years
Never
Other, specify

Data Quality Assurance

Data Use
Collaboration
Advanced Activities

Survey Feedback

44a. For which of the following has the NDI linkage proven to be useful? Check all that
apply.
Survivorship
Data quality
Research
Other, specify

Optional
Validation

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Not applicable
44b. Does your CCR update your database with vital status and cause of death
following NDI linkage?
Yes
No
Not applicable
45. With which databases did your CCR link its records in 2020-2021 for follow-up or
some other purpose? Check all that apply.
State Vital Statistics
National Death Index

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Survey: Advanced Activities PEI

Department of Motor Vehicles
Department of Voter Registration
Indian Health Service
Medicare (Health Care Financing Administration)
Medicare Physician Identification and Eligibility Registry
Medicaid
CDC’s National Breast and Cervical Cancer and Early Detection Program
CDC’s National Colorectal Cancer Screening Program
Insurance Claim Databases (E.G. BC&BS, Kaiser, Managed Care Organization, fee
for service)
Hospital Discharge
Hospital Radiation Therapy Dept.
Hospital Disease Indices
Other, specify:
None
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2022 - Program Evaluation Instrument

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Advanced Activities (page 3 of 3)

Staffing

Legislative Authority
Administration

46. Based on the most recent year of data received from independent (i.e., not hospital-affiliated) pathology
laboratories, please list the top five independent laboratories that do NOT report according to the NAACCR
Volume V standard. List them in descending order by the percent each represents of the total volume of
independent pathology reports received in the most recent year.

Reporting Completeness

1.

Data Exchange

2.

Data Content And Format

Data Quality Assurance
Data Use
Collaboration
Advanced Activities

3.
4.
5.
Advanced Activities Section Comments (You may add comments regarding your responses in the “Advanced
Activities” section above.)

Survey Feedback
Optional
Validation
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Review

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2022 - Program Evaluation Instrument

Survey
      Survey

Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Survey Feedback

Staffing

Legislative Authority
Administration
Reporting Completeness

Data Exchange
Data Content And Format
Data Quality Assurance

Data Use
Collaboration
Advanced Activities

Survey Feedback
Optional
Validation

Review
Save and Logout

47. Please comment below about your experience completing this evaluation
instrument by selecting the choice which best represents your thoughts and
experience:
a. All or most of the questions are clearly stated.
Agree
Disagree
b. I understand the importance of all or most of the questions.
Agree
Disagree
c. For the most part, I found the web technology of the instrument to be
user-friendly.
Agree
Disagree
d. For the most part, I consider the time spent completing the instrument to
be a worthwhile contribution to NPCR and the cancer surveillance
community.
Agree
Disagree
e. Our central registry uses data that are collected in this instrument.
Agree
Disagree

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Survey: Optional PEI

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2022 - Program Evaluation Instrument

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Questionnaire (pdf version)

Glossary

Survey Progress:

Administrative Data

Export & Print

Optional

Staffing

Legislative Authority
Administration
Reporting Completeness

48. I would like to participate in discussions regarding the 2022 evaluation instrument.
Yes
No
Add name and best contact info here:

Data Exchange

Data Content And Format

49. I have the following suggestions/revisions for the PEI questions or web formatting regarding next year’s
evaluation instrument (please comment in the space provided below)

Data Quality Assurance
Data Use
Collaboration
Advanced Activities

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