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pdfNPCR Program Evaluation Instrument (NPCR PEI)
Summary of Proposed Changes for 2017-2019
(numbers correspond to the question number in the survey instrument)
Staff in the Cancer Surveillance Branch (CSB) of DCPC worked collaboratively to review results from the 2015 PEI. Updates to the PEI were
made based on these results, release of the new FOA (DP17-107) and changes to the Program Standards. In addition, determination was made
from the Applications, Statistics, and Informatics Support Team that questions pertaining to Physician Reporting and Meaningful Use will be
removed from the PEI and added to a separate questionnaire that will require separate OMB clearance. It is expected that some questions below
will be deleted or revised. New questions have also been proposed based on the need for information from awardees to CSB and FOA DP17-1707
requirements.
Purpose Statement
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 20XX PEI provide baseline data that can be used to measure compliance with the NPCR Program
Standards. These questions, and the standard they reference, are noted throughout the instrument (e.g., “Program Standard I. a.”)
Using all available information as of December 31, 20XX, the appropriate Central Cancer Registry (CCR) staff should complete the
PEI.
Survey Changes:
Staffing Section –
2. Please complete this table with the number of FTEs who work in the capacity of the position titles listed. In this table, 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. So, if
a position is vacant, it still counts as a position. Remember to use the same FTE calculation method as described above. Please note CTR
credentials may be held by several registry positions and should be counted accordingly.
Principal Investigator
Total Count FTEs
Non- Contractor Contractor
_________
_________
Program Director
_________
_________
Removed Row: Registry Manager
Program Manager
Budget Analyst
CTR Quality Control Staff
Non-CTR Quality Control Staff
CTR Education/Training Staff
Epidemiologists
Statisticians
Computer/IT/GIS Specialists
Other staff, specify: ______________________
Total Number of Staff
Total Number CTRs (of total number of staff)
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
_________
Position (FTE or percentage of FTE)
Legislative Authority Section – All except one question under this section was deleted because 100% of the awardees meet this standard.
3.
Delete
4a. Delete
4b. Delete
4c. Delete
4e. Consolidated with question 4d to make one question (#3) in this section
5a. Delete
5b. Delete
6.
7.
8a.
8b.
Delete
Delete
Delete
Delete
Administrative Data Section – no changes
Reporting Completeness Section –
12a. Revised question in table and reworded disclaimer for clarity
Number
Required to
Report
(Denominator)
Number
Compliant with
Reporting* at
the end of 20XX
Number
Reporting
Electronically
**
HOSPITALS
Hospitals with a cancer registry (non-federal)
Hospitals without a cancer registry (nonfederal)
Added a row to capture CoC hospitals
VA hospitals #
IHS hospitals #
Tribally Hospitals (Tribal hospitals)
PATHOLOGY LABORATORIES
In-state independent labs#
Out-of-state independent labs
Other
TOTAL
* ALL facilities that report -- not only those reporting in a timely manner. Those facilities that report -not only those reporting in a timely
manner
12b. Delete Physician Reporting table. This table will be included in a separate survey.
14c. Removed to reference to question 14a - If Yes” for 14a, have these data proven to be helpful in finding new incident cases?
17. Delete
15a. New Question: 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_____________
Do not collect information on industrial or occupational history
15b.New Question: Do you conduct any ADDITIONAL activities (e.g. linkages with external databases) to collect or improve upon industrial or
occupational history information?
No
Yes, please describe_____________________
Data Exchange Section –
19d. Revised Answer Choices: 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
No, no exchange agreements in place with neighboring states, but some are in place with non-neighboring states
No, no exchange agreements in place
List all existing CCR agreements here: ________________________________
19f. Reworded for clarity: Are NPCR core data items are included in the dataset submitted to other states?
Yes
No
19g. Reworded for clarity: Do 99% of data submitted to other states passes an NPCR-prescribed set of standard edits?
Yes
No
19h. Reworded for clarity: Are Exchanged data are transmitted via a secure encrypted Internet-based system?
Yes
No
19i. Reworded for clarity: Is the standardized, NPCR-recommended data exchange format is used to transmit data reports (The current NAACCR
record layout version specified in Standards for Cancer Registries Volume II: Data Standards and Data Dictionary)?
Yes
No
Data Content and Format Section –
21. Delete
21. Renumbered Question and Added another answer choice: 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 Quality Assurance Section –
26. Removed Yes/No for each answer choice to reflect a simpler selection method and added additional answer options - 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
Other: (Specify)________________
27a. Reworded for clarity: Although required to match 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
29e. New Question: How often does your CCR provide feedback to reporting facilities on the quality, completeness, and timeliness of their
data?
Quarterly
Every six months
Annually
Other, describe: ____________________________________________________
Data Use Section –
34a. Delete
33. Reworded an answer choice: 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:
Data Use Category
Comprehensive cancer control detailed incidence/mortality
estimates
Detailed incidence/mortality by stage and geographic area
Collaboration, as defined in DP17-1701, 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: ______________________________
Number per
Year
_________
_________
_________
_________
_________
_________
_________
_________
Collaborative Relationships Section –
38a. Delete
38b. Delete
40. Added another answer option and removed example behind “Data linkages” for clarity- 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 departmental staff
Provides training/technical assistance to NBCCEDP staff
Provides data to NBCCEDP
Provides technical material for publications to NBCCED P
Provides subject matter expertise to NBCCEDP
Data linkages (NBCCEDP database, Minimum Data Elements (MDE) Study
Partner on collaborative projects
All of the above
Other, specify:
_________________________
None of the above, Explain: ___________________________
41.
Added other answer options - With which chronic disease programs does your CCR collaborate?
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: ________________________________
Advanced Activities Section –
43. Delete
49. Delete
47. New Question – Based on the most recent year of data received, please list the top 5 independent laboratories that do NOT report according to
the NAACCR Volume V standard by volume of % total reports received:
1.
___________________________________________: ____________%
2.
___________________________________________: ____________%
3.
___________________________________________: ____________%
4.
5.
___________________________________________: ____________%
___________________________________________: ____________%.
Survey Feedback Section – no changes
Optional Section –
49.
Reworded answer choices: I would like to participate in discussions regarding the 2019 evaluation instrument.
Yes; add name and best contact info here: _____________________________________
No
NPCR PEI - Login
2017 - NPCR Program Evaluation Instrument
Form Approved
OMB NO. 0920-0706
Exp. Date: 05/31/2018
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CoverPage
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Program Evaluation Instrument
Form Approved
OMB No. 0920-0706
Exp. Date 05/31/2018
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 2017 PEI provide baseline data that can be used to measure compliance with the NPCR Program
Standard. Using all available information as of December 31, 2016, the appropriate Central Cancer Registry (CCR) staff should
complete the PEI.
Deadline for completion: July 24, 2017
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).
Note: Please update to reflect Registry Status as of December 31, 2016.
This site was developed through a contract with the Centers for Disease Control and Prevention (CDC).
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Administrative Data
Export & Print
Administrative Data
Staffing
Legislative Authority
Administration
Reporting Completeness
Data Exchange
Data Content And Format
Data Quality Assurance
Data Use
Collaboration
Advanced Activities
Survey Feedback
Optional
Validation
State/Territory
SA
NPCR
reference
year
1995
Registry
reference
year
1981
Registry
Program
Director
Cooperative
17-1701Agreement #
Most Current
$
Grant Award
Amount
CDC Program
Consultant
Paran Pordell
Your name
Review
Title
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Phone
number
Status
In Progress
Date
Completed
12/23/2016
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Data Exchange
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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, 2016, 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
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Funding Category
Number of NPCR-funded
(non-contracted) FTE
positions
Number of NPCR-funded,
Contracted FTE positions
Number of State-funded
(non-contracted) FTE
positions
Number of State-funded,
Contracted FTE positions
Number of non-contracted
FTE positions funded by
other sources
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Total Count FTEs
Filled
Vacant
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Number of Contracted FTE
positions funded by other
sources
Totals
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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
Collaboration
Total Count FTEs
Non-Contractor
Contractor
Principal Investigator
Program Director
Program Manager
Advanced Activities
Survey Feedback
Optional
Budget Analyst
CTR Quality Control Staff
Validation
Review
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Non-CTR Quality Control Staff
CTR Education /Training Staff
Epidemiologists
Statisticians
Computer / IT / GIS Specialists
Other staff, specify
Total Number of Staff
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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Staffing
Legislative Authority
3. Have any law/regulations been revised to address cancer reporting in the past two years?
Yes
Administration
Reporting Completeness
Data Exchange
No
Please describe:
Legislation Section Comments (You may add comments regarding your responses and/or any anticipated
legislative barriers related to the “Legislation” section above.)
Data Content And Format
Data Quality Assurance
Data Use
Collaboration
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Survey Progress:
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Administration 1 of 2
Staffing
Legislative Authority
Administration
Reporting Completeness
Data Exchange
Data Content And Format
Data Quality Assurance
Data Use
Collaboration
Advanced Activities
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Optional
Validation
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4. Does your CCR maintain an operational manual describing registry
operations, policies and procedures that, at a minimum, contains the
following? Check all that apply.
Page 4 Administration
Reporting laws/regulations
Yes
No
List of reportable diagnoses
Yes
No
List of required data items
Yes
No
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):
e. Conducting follow-back to reporting
facilities on quality assurance issues
Yes
No
f. Conducting record consolidation
Yes
No
g. Maintaining detailed documentation of all
quality assurance operations
Yes
No
h. Education and Training
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
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Procedures for data release including access
to and disclosure of information
Yes
No
Procedures for maintaining and updating the
operational manual
Yes
No
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Legislative Authority
Administration
Reporting Completeness
Data Exchange
Data Content And Format
Data Quality Assurance
Data Use
Collaboration
Advanced Activities
Survey Feedback
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
All of the above
Other, specify:
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.)
Optional
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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 2016. 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
Number
Number
Compliant
Number
Required to
with
Reporting
Report
Reporting*
Electronically**
(Denominator ) at the end
of 2016
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HOSPITALS
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Hospitals with a cancer
registry (non-federal)
Hospitals without a cancer
registry (non-federal)
CoC Hospitals#
VA Hospitals#
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Survey: Reporting Completeness PEI
IHS Hospitals#
Tribally Hospitals#
PATHOLOGY LABORATORIES
In-state independent labs
Out-of-state independent
labs
Other
TOTAL
*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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Staffing
Legislative Authority
Administration
Reporting Completeness
Data Exchange
Data Content And Format
Data Quality Assurance
Data Use
Collaboration
Advanced Activities
8. Do you require that non-analytic (classes 30-38) cases be reported to your
CCR?
Yes
No
9. Do you receive data from the Department of Defense's Automated Central
Tumor Registry(ACTUR) dataset? (If No, please skip to Question 12)
Yes
No
10. If Yes, how often? Check only one.
Quarterly
Every 6 months
Annually
Other, describe
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11. If Yes, have these data proven to be helpful in finding new incident cases?
Yes
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:
13a. Do you receive data directly from the Veterans Administration’s central
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:
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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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Administrative Data
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Staffing
Legislative Authority
Administration
Reporting Completeness
Data Exchange
Data Content And Format
Data Quality Assurance
Data Use
Collaboration
Advanced Activities
Survey Feedback
Optional
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:
Reporting Completeness Section Comments (You may add comments regarding your responses in the
“Reporting Completeness” section above.)
Validation
Review
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Survey: Data Exchange PEI
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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
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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:
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
No, no exchange agreements in place with neighboring states, but some are in place with non-neighboring
states
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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. Are NPCR core data items included in the dataset submitted to other states?
Yes
No
g. Do 99% of data submitted to other states pass an NPCR-prescribed set of standard edits?
Yes
No
h. Are exchanged data transmitted via a secure encrypted Internet-based system?
Yes
No
i. Is the standardized, NPCR-recommended data exchange format used to transmit data reports (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
Secure encrypted e-mail
Other, specify:
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Exchange” section above.)
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19. Is your CCR able to receive secure, encrypted cancer abstract data from reporting sources via the
Internet?
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
Collaboration
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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
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22. Please respond to each of the following statements to describe your CCR's
quality assurance program:
Page 11 Data Quality Assurance
A designated CTR is responsible for the quality
Yes
assurance program
No
Qualified, experienced CTRs conduct quality
assurance activities
Yes
No
At least once every 5 years, case-finding and/or reabstracting audits from a sampling of source
documents are conducted for each hospital-based
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?
Yes
No
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
Other, specify:
25. Although required to match 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
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26. Does your CCR match by tumor (site/histology) and not just by patient
identifying information?
Yes
No
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27a. Does your CCR update the CCR database following death
certificate matching within 3 months of linkage?
Death information
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.)
Data Quality Assurance
Page 12 Data Quality Assurance
Manually (%)
Electronically (%)
Data Use
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Death information
Demographic Information
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28. Does your CCR perform record consolidation on the following?
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Patient data group
Electronic Manual Both Neither
Treatment data group
Electronic Manual Both Neither
Follow-up data group
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29a. Does your CCR provide an edit set to your reporting facilities and/or vendors for use prior to data
submissions to your CCR?
Yes
No
29b. If Yes, are facilities required to run prescribed edits prior to their data submission to your CCR?
Data Exchange
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Data Quality Assurance
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Yes
No
29c. Does your CCR have an established threshold for percent of records passing edits on incoming
submissions?
Yes
No
29d. If Yes what is the threshold?
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100%
90% or greater
80% or greater
Less than 80%
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
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30. Within 12 months of the end of the diagnosis year with data that are 90%
complete, did your CCR calculate incidence counts or rates 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
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No
31a. Within 24 months of the end of the diagnosis year with data that are 95%
complete, did your CCR calculate incidence rates and counts in an electronic data
file or report? (The report should include, at a minimum, age-adjusted incidence
rates and age-adjusted mortality rates for the diagnosis year by sex for SEER site
groups, and, where applicable, 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).
Yes
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
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.
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Hard (paper) copy
Electronic word-processed file
Web page/query system
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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
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Collaboration
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Detailed incidence/mortality by stage
and geographic area
Collaboration, as defined in DP17-1701,
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
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Number per Year
Comprehensive cancer control detailed
incidence/mortality estimates
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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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
Press releases, statements
Requests for proposals, bid solicitations
None
Other, specify:
36. Does your CCR use United States Cancer Statistics (USCS) data when performing comparative analyses?
Yes
No Explain:
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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).
Yes
No
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
American Cancer Society
Clinical-laboratory personnel
Pathologists
Clinicians
Researchers
Oncologists
American College of Surgeons
All of the above
Other, specify:
37c. If you have an Advisory Committee, how often does this group convene,
including in-person and teleconferences? Check only one.
Quarterly
Annually
Biannually
Other, specify:
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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 and NCCCP departmental staff
Provides training/technical assistance to NBCCEDP and NCCCP staff
Provides data to NBCCEDP and NCCCP
Provides technical material for publications to NBCCEDP and NCCCP
Provides subject matter expertise to NBCCEDP and NCCCP
Data linkage
Partner on collaborative projects
All of the above
Other, specify:
None of the above, explain
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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:
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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:
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
Physician disease reporting
Other healthcare data reporting
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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
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)?
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Yes
No
44. If Yes, is early case capture performed for:
All cases
Subset of cases (e.g. Pediatric Cancer)
Special Studies
Other, specify:
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45a. How often does your CCR link to the National Death Index (NDI)? Please
check only one. (If never, skip to question 46.)
Every Year
Every Other Year
Every 3-5 Years
Never
Other, specify
45b. For which of the following has the NDI linkage proven to be useful? Check all
that apply.
Survivorship
Data quality
Research
Other, specify
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Not applicable
45c. Does your CCR update your database following NDI linkage?
Yes
No
Not applicable
46. With which databases did your CCR link its records in 2016 for follow-up or some
other purpose? Check all that apply.
State Vital Statistics
National Death Index
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
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Insurance Claim Databases (IE: BC&BS, Kaiser, Managed Care Organization, fee
for service etc.)
Hospital Discharge
Hospital Radiation Therapy Dept.
Hospital Disease Indices
Other, specify:
None
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47. 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.
1.
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48. 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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49. I would like to participate in discussions regarding the 2019 evaluation instrument.
Yes
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No
Add name and best contact info here:
50. 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)
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Epidemiologists: Non- Response
Contracted
is missing
Edit
Staffing
2
Epidemiologists:
Contracted
Response
is missing
2
Statisticians: NonContracted
Response
is missing
2
Statisticians:
Contracted
Response
is missing
2
Computer / IT / GIS
Specialists: NonContracted
Response
is missing
Edit
Staffing
Edit
Staffing
Edit
Staffing
Edit
Staffing
2
Computer / IT / GIS Response
Specialists: Contracted is missing
Edit
Staffing
2
Total Number CTRs
(may overlap with
above categories)
Response
is missing
2
Total Number CTRs
(may overlap with
above categories)
Response
is missing
Edit
Staffing
Edit
Legislation
Must
select
one
3
Edit
Administration
4
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Reporting
laws/regulations
Must
select
one
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Edit
Administration
4
List of reportable
diagnoses
Must
select
one
4
List of required data
items
Must
select
one
4
a. Monitoring
timeliness of reporting
Must
select
one
4
b. Receipt of data
Must
select
one
4
c. Database
management including
a description of the
registry operating
system(software)
Must
select
one
4
d. Conducting death
certificate clearance
Must
select
one
4
e. Conducting followback to reporting
facilities on quality
assurance issues
Must
select
one
4
f. Conducting record
consolidation
Must
select
one
4
g. Maintaining detailed
documentation of all
quality assurance
operations
Must
select
one
4
h. Education and
Training
Must
select
one
Edit
Administration
Edit
Administration
Edit
Administration
Edit
Administration
Edit
Administration
Edit
Administration
Edit
Administration
Edit
Administration
Edit
Administration
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Administration
4
Procedures for
conducting data
exchange including a
list of states with which
case-sharing
agreements are in place
Must
select
one
4
Procedures for
conducting data
linkages
Must
select
one
4
Procedures for ensuring
confidentiality and data
security including
disaster planning
Must
select
one
4
Procedures for data
release including
access to and
disclosure of
information
Must
select
one
4
Procedures for
maintaining and
updating the operational
manual
Must
select
one
Edit
Administration
Edit
Administration
Edit
Administration
Edit
Administration
Edit
Administration
5
Must
select at
least one
6
Must
select
one
Edit
Administration
Edit
Reporting
Completeness
7
Hospitals with a cancer
registry (non-federal): Response
Number Required to is missing
Report (Denominator)
7
Hospitals with a cancer
registry (non-federal):
Response
Number Compliant with
is missing
reporting at the end
2016
Edit
Reporting
Completeness
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Edit
Reporting
Completeness
7
Hospitals with a cancer
registry (non-federal): Response
Number Reporting
is missing
Electronically
Edit
Reporting
Completeness
Hospitals without a
cancer registry (nonfederal): Number
Required to Report
(Denominator )
7
Response
is missing
Edit
Reporting
Completeness
7
Hospitals without a
cancer registry (nonfederal): Number
Response
Compliant with
is missing
Reporting at the end of
2016
7
Hospitals without a
cancer registry (non- Response
federal): Number
is missing
Reporting Electronically
7
CoC Hospitals: Number
Response
Required to Report
is missing
(Denominator )
7
CoC Hospitals: Number
Compliant with
Response
Reporting at the end of is missing
2016
7
CoC Hospitals: Number Response
Reporting Electronically is missing
7
VA Hospitals: Number
Response
Required to Report
is missing
(Denominator )
7
VA Hospitals: Number
Compliant with
Response
Reporting at the end of is missing
2016
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
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Reporting
Completeness
7
VA Hospitals: Number Response
Reporting Electronically is missing
Edit
Reporting
Completeness
7
IHS Hospitals: Number
Response
Required to Report
is missing
(Denominator )
7
IHS Hospitals: Number
Compliant with
Response
Reporting at the end of is missing
2016
7
IHS Hospitals: Number Response
Reporting Electronically is missing
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Tribally Owned
Hospitals: Number
Required to Report
(Denominator )
7
Response
is missing
Edit
Reporting
Completeness
7
Tribally Owned
Hospitals: Number
Response
Compliant with
is missing
Reporting at the end of
2016
7
Tribally Owned
Response
Hospitals: Number
is missing
Reporting Electronically
7
In-State Independent
Pathology Laboratories: Response
Number Required to is missing
Report (Denominator )
7
In-State Independent
Pathology Laboratories:
Response
Number Compliant with
is missing
Reporting at the end of
2016
7
In-State Independent
Pathology Laboratories: Response
Number Reporting
is missing
Electronically
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
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Reporting
Completeness
7
Out-of-State
Independent Pathology
Response
Laboratories: Number
is missing
Required to Report
(Denominator )
7
Out-of-State
Independent Pathology
Laboratories: Number Response
Compliant with
is missing
Reporting at the end of
2016
7
Out-of-State
Independent Pathology Response
Laboratories: Number is missing
Reporting Electronically
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
8
Must
select
one
9
Must
select
one
13a
Must
select
one
Edit
Reporting
Completeness
Edit
Reporting
Completeness
Edit
Reporting
Completeness
13b
Number of facilities:
Response
is missing
14
Number of cases
missed:
Response
is missing
Edit
Reporting
Completeness
Edit
Reporting
Completeness
15a
Must
select at
least one
15b
Must
select
one
Edit
Reporting
Completeness
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Edit
Data
Exchange
16a
Must
select
one
16b
Must
select
one
16c
Must
select
one
17a
Must
select
one
17b
Must
select
one
17c
Must
select
one
17d
Must
select
one
17e
Must
select at
least one
17f
Must
select
one
17g
Must
select
one
Edit
Data
Exchange
Edit
Data
Exchange
Edit
Data
Exchange
Edit
Data
Exchange
Edit
Data
Exchange
Edit
Data
Exchange
Edit
Data
Exchange
Edit
Data
Exchange
Edit
Data
Exchange
Edit
Data
Exchange
17h
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Must
select
one
Edit
Data
Exchange
17i
Must
select
one
18
Must
select at
least one
19
Must
select
one
20
Must
select
one
21
Must
select at
least one
Edit
Data
Exchange
Edit
Data Content
And Format
Edit
Data Content
And Format
Edit
Data Content
And Format
Edit
Data Quality
Assurance
22
A designated CTR is
responsible for the
quality assurance
program
Must
select
one
22
Qualified, experienced
CTRs conduct quality
assurance activities
Must
select
one
22
At least once every 5
years, case-finding
and/or re-abstracting
audits from a sampling
of source documents
are conducted for each
hospital-based reporting
facility. This may
include external audits
(NPCR/SEER)
Must
select
one
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
22
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Data consolidation
procedures are
Must
select
one
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performed according to
an accepted protocol
Edit
Data Quality
Assurance
Procedures are
performed for followback to reporting
facilities on quality
issues
22
Must
select
one
Edit
Data Quality
Assurance
23
Must
select
one
24
Must
select at
least one
25
Must
select
one
26
Must
select
one
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
27a
Death information
Must
select
one
27a
Missing demographic
information
Must
select
one
28
Patient data group
Must
select
one
28
Treatment data group
Must
select
one
28
Follow-up data group
Must
select
one
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
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Data Quality
Assurance
29a
Must
select
one
29c
Must
select
one
29e
Must
select
one
30
Must
select
one
31a
Must
select
one
31b
Must
select
one
Edit
Data Quality
Assurance
Edit
Data Quality
Assurance
Edit
Data Use
Edit
Data Use
Edit
Data Use
Edit
Data Use
32a
Most current diagnosis Response
year:
is missing
32b
Must
select at
least one
33
Comprehensive cancer
Response
control: Number per
is missing
Year
33
Detailed
incidence/mortality
Response
estimates: Number per is missing
Year
Edit
Data Use
Edit
Data Use
Edit
Data Use
Edit
Data Use
33
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Collaboration with
cancer screening
Response
is missing
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programs for breast,
colorectal, or cervical
cancer
Edit
Data Use
Health event
investigation(s):
Number per Year
33
Response
is missing
Edit
Data Use
33
Needs
assessment/program Response
planning: Number per is missing
Year
Edit
Data Use
Program evaluation:
Number per Year
33
Response
is missing
Edit
Data Use
33
Epidemiologic studies: Response
Number per Year
is missing
Edit
Data Use
34a
Must
select
one
35
Must
select at
least one
36
Must
select
one
40
Must
select at
least one
41
Must
select at
least one
42
Must
select at
least one
Edit
Data Use
Edit
Data Use
Edit
Advanced
Activities
Edit
Advanced
Activities
Edit
Advanced
Activities
Edit
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Advanced
Activities
43
Must
select
one
Edit
Advanced
Activities
45a
Must
select
one
46
Must
select at
least one
37a
Must
select
one
37c
Must
select
one
38
Must
select at
least one
39
Must
select at
least one
48a
Must
select
one
48b
Must
select
one
48c
Must
select
one
48d
Must
select
one
Edit
Advanced
Activities
Edit
Collaborative
Relationships
Edit
Collaborative
Relationships
Edit
Collaborative
Relationships
Edit
Collaborative
Relationships
Edit
Survey
Feedback
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Survey
Feedback
Edit
Survey
Feedback
Edit
Survey
Feedback
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Survey
Feedback
48e
Must
select
one
49
Must
select
one
Edit
Optional
Edit
Continue
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2017 - Program Evaluation Instrument
Survey
Survey
Questionnaire
Glossary
Survey Progress:
Administrative Data
Staffing
Legislative Authority
Administration
Reporting Completeness
Data Exchange
Data Content And Format
Data Quality Assurance
Data Use
Collaboration
Advanced Activities
Survey Feedback
Optional
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your responses are correct, then click the "Submit" button to submit
your survey.
Submit your survey
You must address all errors before you can submit the survey! Go to
validation page
Staffing
1. On December 31, 2016, 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.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.
Validation
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Funding Category
Filled Vacant
Number of NPCR-funded (non-contracted) FTE
positions
Number of NPCR-funded, Contracted FTE positions
Number of State-funded (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
Totals
0
0
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
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previously. Please note CTR credentials may be held by several
registry positions and should be counted accordingly.
Position (FTE or percentage of FTE)
NonContractor
Contractor
Principal Investigator
Program Director
Program Manager
Budget Analyst
CTR Quality Control Staff
Non-CTR Quality Control Staff
CTR Education /Training Staff
Epidemiologists
Statisticians
Computer / IT / GIS Specialists
Other staff, specify
Total Number of Staff
0
0
Total Number CTRs (of total number of staff)
Staffing Section Comments (You may add comments regarding your
responses in the “Staffing” section above.)
Edit
Legislation
3. Have any law/regulations been revised to address cancer reporting in the
past two years?
Legislation Section Comments (You may add comments regarding your
responses and/or any anticipated legislative barriers related to the
“Legislation” section above.)
Edit
Administration
4. Does your CCR maintain an operational manual describing registry
operations, policies and procedures that, at a minimum, contains the
following? Check all that apply.
Reporting laws/regulations
List of reportable diagnoses
List of required data items
Data processing operational procedure for (Check all that apply):
a. Monitoring timeliness of reporting
b. Receipt of data
c. Database management including a description of the registry operating
system(software)
d. Conducting death certificate clearance
Procedure for implementing and maintaining a quality assurance/control
program including (check all that apply, e-h):
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e. Conducting follow-back to reporting facilities on quality assurance
issues
f. Conducting record consolidation
g. Maintaining detailed documentation of all quality assurance operations
h. Education and Training
Procedures for conducting data exchange including a list of states with
which case-sharing agreements are in place
Procedures for conducting data linkages
Procedures for ensuring confidentiality and data security including disaster
planning
Procedures for data release including access to and disclosure of
information
Procedures for maintaining and updating the operational manual
5. Does your CCR produce reports that are used to monitor the registry
operations and database, including processes and activities? Check all that
apply.
6. Does your CCR have an abstracting and coding manual that is provided
for use by all reporting sources?
Administration Section Comments (You may add comments regarding
your responses in the “Administration” section above.)
Edit
Reporting Completeness
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 2016. 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).
Number
Number
Compliant
Number
Required to
with
Reporting
Report
Reporting*
Electronically**
(Denominator ) at the end
of 2014
HOSPITALS
Hospitals with a cancer
registry (non-federal)
Hospitals without a
cancer registry (nonfederal)
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CoC Hospitals#
VA Hospitals#
IHS Hospitals#
Tribally Hospitals#
PATHOLOGY LABORATORIES
In-state independent labs
Out-of-state independent
labs
Other
TOTAL
0
0
0
8. Do you require that non-analytic (classes 30-38) cases be reported to
your CCR?
9. Do you receive data from the Department of Defense's Automated
Central Tumor Registry(ACTUR) dataset? (If No, please skip to Question
12)
10. If Yes, how often? Check only one.
11. If Yes, have these data proven to be helpful in finding new incident
cases?
12. If No, why not? Check all that apply.
13a. Do you receive data directly from the Veterans Administration’s
central cancer registries in your state?
13b. How many VA facilities currently report your CCR indirectly from the VA
central cancer registry in Washington, DC?
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 nonreporting by VA facilities?
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.
15b. Do you conduct any ADDITIONAL activities (e.g. linkages with external
databases) to collect or improve upon industrial or occupational history
information?
Reporting Completeness Section Comments (You may add comments
regarding your responses in the “Reporting Completeness” section above.)
Edit
Data Exchange
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16. Does your CCR use and require the following standardized, CDCrecommended 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)?
b. Pathology reports (NAACCR Standards for Cancer Registries Volume V:
Pathology Laboratory Electronic Reporting)?
c. Ambulatory healthcare providers using electronic health records
(Implementation Guide for Ambulatory Healthcare Provider Reporting to
Central Cancer Registries)
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:
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:
c. The recommended frequency of data exchange is at least two times per
year. Your CCR exchanges data at the following frequency:
d. Exchange agreements are in place with all bordering central cancer
registries:
e. What type of records do you transmit for interstate exchange? Check all
that apply.
f. Are NPCR core data items included in the dataset submitted to other
states?
g. Do 99% of data submitted to other states pass an NPCR-prescribed set of
standard edits?
h. Are exchanged data transmitted via a secure encrypted Internet-based
system?
i. Is the standardized, NPCR-recommended data exchange format used to
transmit data reports (The current NAACCR record layout version specified
in Standards for Cancer Registries Volume II: Data Standards and Data
Dictionary):
18. What type(s) of secure encrypted Internet-based system is used for
interstate data exchange? Check all that apply.
Data Exchange Section Comments (You may add comments regarding
your responses in the “Data Exchange” section above.)
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Data Content And Format
19. Is your CCR able to receive secure, encrypted cancer abstract data from
reporting sources via the Internet?
20. What is the primary software system used to process and manage
cancer data in your CCR? Check only one.
21. Which of the following Registry Plus programs do you use? Check all
that apply.
Data Content and Format Section Comments (You may add comments
regarding your responses in the “Data Content and Format” section above.)
Edit
Data Quality Assurance
22. Please respond to each of the following statements to describe your
CCR's quality assurance program:
A designated CTR is responsible for the quality assurance program
Qualified, experienced CTRs conduct quality assurance activities
At least once every 5 years, case-finding and/or re-abstracting audits from
a sampling of source documents are conducted for each hospital-based
reporting facility. This may include external audits (NPCR/SEER)
Data consolidation procedures are performed consistently from all source
records
Procedures are in place for follow-back to reporting facilities on quality
issues
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?
24. In the past year, which of the following type of quality control audits or
activities did your CCR conduct? Check all that apply.
25. Although required to match on all underlying causes of death, does your
CCR match all causes of death against your registry data to identify a
reportable cancer?
26. Does your CCR match by tumor (site/histology) and not just by patient
identifying information?
27a. Does your CCR update the CCR database following death certificate
matching within 3 months of linkage?
Death information
Missing demographic information
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.)
Manually Electronically
(%)
(%)
Death information
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Demographic Information
28. Does your CCR perform record consolidation on the following?
Patient data group
Treatment data group
Follow-up data group
29a. Does your CCR provide an edit set to your reporting facilities and/or
vendors for use prior to data submissions to your CCR?
29b. If Yes, are facilities required to run prescribed edits prior to their data
submission to your CCR?
29c. Does your CCR have an established threshold for percent of records
passing edits on incoming submissions?
29d. If Yes what is the threshold?
29e. How often does your CCR provide feedback to reporting facilities on
the quality, completeness, and timeliness of their data?
Data Quality Assurance Section Comments (You may add comments
regarding your responses in the “Data Quality Assurance” section above.)
Edit
Data Use
30. Within 12 months of the end of the diagnosis year with data that are 90%
complete, did your CCR calculate incidence counts or rates 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?
31a. Within 24 months of the end of the diagnosis year with data that are
95% complete, did your CCR calculate incidence rates and counts in an
electronic data file or report? (The report should include, at a minimum, ageadjusted incidence rates and age-adjusted mortality rates for the diagnosis
year by sex for SEER site groups, and, where applicable, by sex, race,
ethnicity, and geographic area).
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 screeningamenable cancers and cancers associated with modifiable risk factors (e.g.,
tobacco, obesity, HPV).
31c. If Yes, indicate what information was included in the report: Check all
that apply.
32a. What is the most current diagnosis year a data file or report is available
to the public?
32b. In what format is this report available? Check all that apply.
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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:
Data Use Category
Number
per
Year
Comprehensive cancer control detailed incidence/mortality
estimates
Detailed incidence/mortality by stage and geographic area
Collaboration, as defined in DP17-1701, 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?
34b. If “Yes”, please list the citation(s) in the space provided:
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.
36. Does your CCR use United States Cancer Statistics (USCS) data when
performing comparative analyses?
Data Use Section Comments (You may add comments regarding your
responses in the “Data Use” section above.)
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Collaborative Relationships
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).
37b. If Yes, the Advisory Committee includes representation from: Check all
that apply.
37c. If you have an Advisory Committee, how often does this group
convene, including in-person and teleconferences? Check only one.
38. In what ways does your CCR collaborate with your state's National
Breast and Cervical Cancer Early Detection Program (NBCCEDP) and
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Survey: Review PEI
National Comprehensive Cancer Control Program (NCCCP)? Check all
that apply.
39. With which other Department of Health programs does your CCR
collaborate? Check all that apply.
Collaborative Relationship Section Comments (You may add comments
regarding your responses in the “Collaborative Relationship” section above.)
Edit
Advanced Activities
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.
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.
42. Does your CCR conduct at least one of the following advanced
activities? Check all that apply.
43. Does your registry have a system in place for early case capture (rapid
case ascertainment)?
44. If Yes, is early case capture performed for:
45a. How often does your CCR link to the National Death Index (NDI)?
Please check only one. (If never, skip to question 46.)
45b. For which of the following has the NDI linkage proven to be useful?
Check all that apply.
45c. Does your CCR update your database following NDI linkage?
46. With which databases did your CCR link its records in 2016 for follow-up
or some other purpose? Check all that apply.
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Survey: Review PEI
47. 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.
1.
2.
3.
4.
5.
Advanced Activities Section Comments (You may add comments
regarding your responses in the “Advanced Activities” section above.)
Edit
Survey Feedback
48. 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.
b. I understand the importance of all or most of the questions.
c. For the most part, I found the web technology of the instrument to be
user-friendly.
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.
e. Our central registry uses data that are collected in this instrument.
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Optional
49. I would like to participate in discussions regarding the 2019 evaluation
instrument.
50. 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)
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Submit your survey
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Submit
| File Type | application/pdf |
| Author | Guo, Jing |
| File Modified | 2017-03-30 |
| File Created | 2017-03-30 |