Att 6 - Program evaluation results

Cancer - National Program of Cancer Registries - Program Evaluation - Results

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Program Evaluation Instrument (PEI) Report for Survey Year 2018
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National Report
Staffing
1. On December 31, 2017, how many total FTE central cancer registry (CCR) staff positions were
funded? In this table, 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.

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Total Count FTEs
Funding Category

Filled

Vacant

National
Median (Range)

National
Median (Range)

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

4.00 (0.00 - 19.00) 0.00 (0.00 - 3.00)

Number of NPCR-funded, contracted FTE positions

0.00 (0.00 - 15.10) 0.00 (0.00 - 2.00)

Number of State-funded (non contracted) FTE positions

1.40 (0.00 - 25.00) 0.00 (0.00 - 9.30)

Number of State-funded, contracted FTE positions

0.00 (0.00 - 33.70) 0.00 (0.00 - 1.00)

Number of non contracted FTE positions funded by other sources 0.00 (0.00 - 18.80) 0.00 (0.00 - 1.00)
Number of contracted FTE positions funded by other sources
Totals

0.00 (0.00 - 80.10) 0.00 (0.00 - 0.50)
9.20 (1.30 - 136.00) 1.00 (0.00 - 12.30)
Total Respondents: 50

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.
Total Count FTEs
Position (FTE or percentage of FTE)

Non Contractor

Contractor

National
Median (Range)

National
Median (Range)

Principal Investigator

0.00 (0.00 - 1.00)

0.00 (0.00 - 2.70)

Program Director

0.50 (0.00 - 1.00)

0.00 (0.00 - 2.50)

Program Manager

0.50 (0.00 - 6.00)

0.00 (0.00 - 2.90)

Budget Analyst

0.10 (0.00 - 1.00)

0.00 (0.00 - 2.70)

CTR Quality Control Staff

2.00 (0.00 - 17.00) 0.00 (0.00 - 40.50)

Non-CTR Quality Control Staff

0.10 (0.00 - 18.00)

0.00 (0.00 - 3.00)

CTR Education /Training Staff

0.80 (0.00 - 2.00)

0.00 (0.00 - 3.00)

Epidemiologists

0.80 (0.00 - 4.90)

0.00 (0.00 - 9.60)

Statisticians

0.00 (0.00 - 4.00)

0.00 (0.00 - 3.10)

Computer / IT / GIS Specialists

0.30 (0.00 - 6.30) 0.00 (0.00 - 20.00)

Other staff

1.00 (0.00 - 24.30) 0.00 (0.00 - 40.20)

Total Number of Staff

9.20 (0.10 - 56.80) 0.00 (0.00 - 127.10)

Total Number CTRs (of total number of staff) 3.00 (0.00 - 21.00) 0.00 (0.00 - 59.00)
Total Respondents: 50

Legislative Authority
3. Have any law/regulations been revised to address cancer reporting in the past two years?

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National (Yes)
Percentage (Count)
24.0% (12)

Administration
4. Does your CCR maintain an operational manual that describes registry operations, policies and
procedures that, at a minimum, contains the following? Check all that apply
National (Yes)
Percentage
(Count)
Reporting laws/regulations

100.0% (50)

List of reportable diagnoses

100.0% (50)

List of required data items

100.0% (50)

Data processing operational procedures for (check all that apply):
a. Monitoring timeliness of reporting

94.0% (47)

b. Receipt of data

100.0% (50)

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

98.0% (49)

d. Conducting death certificate clearance

98.0% (49)

Procedures 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

96.0% (48)

f. Conducting record consolidation

98.0% (49)

g. Maintaining detailed documentation of all quality assurance operations

94.0% (47)

h. Education and Training

88.0% (44)

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

98.0% (49)

Procedures for conducting data linkages

90.0% (45)

Procedures for ensuring confidentiality and data security including disaster planning

98.0% (49)

Procedures for data release including access to and disclosure of information
Procedures for maintaining and updating the operational manual

100.0% (50)
92.0% (46)
Total Respondents: 50

5. Does your CCR produce reports that are used to monitor the registry operations and database,
including processes and activities? (Check all that apply)

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National (Yes)
Percentage (Count)
Quality control report (central registry)

86.0% (43)

Quality control reports for each facility

72.0% (36)

Data completeness report for each facility

90.0% (45)

Timeliness of data report for each facility

82.0% (41)

Data workflow report

72.0% (36)

All of the above

52.0% (26)

Other

24.0% (12)

None of the above

2.0% (1)
Total Respondents: 50

6. Does your CCR have an abstracting and coding manual that is provided for use by all reporting
sources?
National (Yes)
Percentage (Count)
90.0% (45)

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 2017. 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).

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Facilities Required to Report Cancer Cases by
Type

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Number
Required
to Report
(Denominator)

Number
Compliant
with Reporting*
at the end of
2017*

Number
Reporting
Electronically**

National
(Range)

National
Total (Pct)

National
Total (Pct)

# (%)

# (%)

Hospital
Hospitals with a cancer registry (non-federal)

(0 - 173)

1702 (95.4)

1653 (92.6)

Hospitals without a cancer registry (non-federal)

(0 - 423)

2393 (92.5)

2021 (78.1)

CoC Hospitals #

(0 - 108)

1204 (98.9)

1183 (97.2)

VA Hospitals #

(0 - 13)

65 (50.0)

86 (66.2)

IHS Hospitals #

(0 - 8)

12 (44.4)

8 (29.6)

(0 - 41)

3 (4.5)

2 (3.0)

In-State Independent Pathology Laboratories

(0 - 897)

757 (38.7)

499 (25.5)

Out-of-State Independent Pathology Laboratories

(0 - 299)

745 (68.0)

475 (43.3)

(0 - 42)

165 (108.6)

107 (70.4)

Tribally Owned Hospitals #
Pathology Laboratories

Other Pathology Laboratories

Total Respondents: 50
* Those 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.

8. Do you require that non-analytic (classes 30-38) cases be reported to your CCR?
National (Yes)
Percentage (Count)
88.0% (44)

9. Do you receive data from the Department of Defense's Automated Central Tumor Registry
(ACTUR) dataset? (If No, please skip to question 12)
National (Yes)
Percentage (Count)
12.0% (6)

10. If Yes, how often? Check only one.
National
Percentage (Count)
Quarterly
Every six months

50.0% (3)

Annually

50.0% (3)

Other

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11. If Yes, have these data proven to be helpful in finding new incident cases?
National (Yes)
Percentage (Count)
100.0% (6)

12. If No, why not? Check all that apply.
National (Yes)
Percentage (Count)
Data are incomplete.

2.3% (1)

Data are not in the proper format for us to consolidate with existing records.

2.3% (1)

We don't have time to deal with it.
Other

15.9% (7)
88.6% (39)

13a. Do you receive data directly from the Veteran's Administration's cancer registries in your
state?
National (Yes)
Percentage (Count)
62.0% (31)

13b. How many VA facilities currently report your CCR indirectly from the VA central cancer
registry in Washington, DC?
National
(Range)
(0 - 99)

14. Based on historical data, how many cases per diagnosis year do you estimate are missed (i.e.,
not ever received) by your CCR because of non-reporting by VA facilities?
National
(Range)
(0 - 4000)

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.
National (Yes)
Percentage
(Count)
Administrative records (e.g. billing or claims databases, or patient forms that are not part of
the medical record)

4.0% (2)

Medical records

58.0% (29)

Death certificate linkages

60.0% (30)

Other

16.0% (8)

Do not collect information on industrial or occupational history

10.0% (5)
Total Respondents: 50

15b. Do you conduct any ADDITIONAL activities (e.g. linkages with external databases) to collect or
improve upon industrial or occupational history information?

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National
Percentage (Count)
No
Yes

8.0% (4)

Please describe:
Total Respondents: 50

Data Exchange
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)?
National (Yes)
Percentage (Count)
98.0% (49)

b. Pathology reports (NAACCR Standards for Cancer Registries Volume V: Pathology Laboratory
Electronic Reporting)?
National
Percentage (Count)
Yes

84.0% (42)

No

4.0% (2)

Not Applicable, not receiving electronic pathology reports

12.0% (6)

Total Respondents: 50

c. Ambulatory healthcare providers using electronic health records (Implementation Guide for
Ambulatory Healthcare Provider Reporting to Central Cancer Registries)
National
Percentage (Count)
Yes

54.0% (27)

No

12.0% (6)

Not Applicable, not receiving Ambulatory healthcare provider reports

34.0% (17)

Total Respondents: 50

17. Do your exchanged data 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:
National (Yes)
Percentage (Count)
98.0% (49)

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:
National (Yes)
Percentage (Count)
98.0% (49)

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c. The recommended frequency of data exchange is at least two times per year. Your CCR
exchanges data at the following frequency:
National
Percentage (Count)
Annually

6.0% (3)

Biannually (two times per year)

80.0% (40)

Other

14.0% (7)
Total Respondents: 50

d. Exchange agreements are in place with all bordering central cancer registries:
National
Percentage
(Count)
Yes, with all bordering CCRs plus other non-adjacent CCRs

88.0% (44)

Yes, with all bordering CCRs but no others

4.0% (2)

Yes, with some bordering CCRs

6.0% (3)

No, no exchange agreements in place with neighboring states, but some are in place with
non-neighboring states
No, no exchange agreements in place

2.0% (1)
Total Respondents: 50

e. What type of records do you transmit for interstate exchange?
National (Yes)
Percentage (Count)
Consolidated cases

62.0% (31)

Source records with text

50.0% (25)

Source records without text

2.0% (1)

Total Respondents: 50

f. Are NPCR core data items are included in the dataset submitted to other states?
National (Yes)
Percentage (Count)
98.0% (49)

g. Do 99% of data submitted to other states passes an NPCR-prescribed set of standard edits?
National (Yes)
Percentage (Count)
94.0% (47)

h. Are exchanged data are transmitted via a secure encrypted Internet-based system?
National (Yes)
Percentage (Count)
98.0% (49)

i. 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):

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National (Yes)
Percentage (Count)
98.0% (49)

18. What type of secure encrypted Internet-based system is used for interstate data exchange?
Check all that apply.
National (Yes)
Percentage (Count)
PHINMS

18.0% (9)

Secure FTP

50.0% (25)

WebPlus

70.0% (35)

HTTPS

24.0% (12)

N-IDEAS

66.0% (33)

Secure encrypted e-mail

26.0% (13)

Other

10.0% (5)
Total Respondents: 50

Data Content And Format
19. Is your CCR able to receive secure, encrypted cancer abstract data from reporting sources via
the Internet?
National
Percentage (Count)
Yes

96.0% (48)

Currently being developed and/or implemented

2.0% (1)

No, not able to receive

2.0% (1)

No, able to receive, but not receiving
Total Respondents: 50

20. What is the primary software system used to process and manage cancer data in your CCR?
Please check only one:
National
Percentage (Count)
Commercial Vendor

40.0% (20)

In-House Software

14.0% (7)

CRS Plus

46.0% (23)
Total Respondents: 50

21. Which of the following Registry Plus programs do you use? Check all that apply

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National (Yes)
Percentage (Count)
Abstract Plus

44.0% (22)

Prep Plus

52.0% (26)

CRS Plus

46.0% (23)

Link Plus

86.0% (43)

Web Plus

72.0% (36)

eMaRC Plus

84.0% (42)

CDA Validation Plus

50.0% (25)

All of the above

18.0% (9)

None of the above
Total Respondents: 50

Data Quality Assurance
22. Please respond to each of the following statements to describe your CCR's quality assurance
program:
National (Yes)
Percentage
(Count)
A designated CTR is responsible for the quality assurance program

96.0% (48)

Qualified, experienced CTRs conduct quality assurance activities

96.0% (48)

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)

88.0% (44)

Data consolidation procedures are performed consistently from all source records

100.0% (50)

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

100.0% (50)
Total Respondents: 50

23. Does your CCR have a designated CTR education/training coordinator, who is a CTR, to provide
training to CCR staff and reporting sources to ensure high quality data?
National (Yes)
Percentage (Count)
92.0% (46)

24. In the past year, which of the following type of quality control audits or activities did your CCR
conduct? Check all that apply:

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National (Yes)
Percentage (Count)
Casefinding

84.0% (42)

Re-abstracting

48.0% (24)

Re-coding

52.0% (26)

Visual editing

92.0% (46)

Data Item Consolidation

84.0% (42)

Other

14.0% (7)
Total Respondents: 50

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?
National (Yes)
Percentage (Count)
86.0% (43)

26. Does your CCR match by tumor (site/histology) and not just by patient identifying information?
National (Yes)
Percentage (Count)
84.0% (42)

27a. Does your CCR update the CCR database following death certificate matching within 3 months
of linkage
National (Yes)
Percentage (Count)
Death information

94.0% (47)

Missing demographic information

92.0% (46)

Total Respondents: 50

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

National
National
Percentage (Range) Percentage (Range)
Death information

14.8 (0 - 100)

85.2 (0 - 100)

Demographic information

21.9 (0 - 100)

78.1 (0 - 100)

28. Does your CCR perform record consolidation on the following:
Electronic

Manual

Both

Neither

National (Yes)
National (Yes)
National (Yes)
National (Yes)
Percentage (Count) Percentage (Count) Percentage (Count) Percentage (Count)
Patient data group

6.0% (3)

10.0% (5)

84.0% (42)

0.0% (42)

Treatment data group

6.0% (3)

18.0% (9)

76.0% (38)

0.0% (38)

Follow-up data group

8.0% (4)

4.0% (2)

76.0% (38)

0.0% (38)

Total Respondents: 50

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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?
National (Yes)
Percentage (Count)
78.0% (39)

29b. If Yes, are facilities required to run prescribed edits prior to their data submission to your
CCR?
National (Yes)
Percentage (Count)
76.0% (38)

29c. Does your CCR have an established threshold for percent of records passing edits on
incoming submissions?
National (Yes)
Percentage (Count)
72.0% (36)

29d. If Yes, what is the threshold?
National
Percentage (Count)
100%

44.4% (16)

90% or greater

50.0% (18)

80% or greater

5.6% (2)

Less than 80%
Total Respondents: 50

29e. How often does your CCR provide feedback to reporting facilities on the quality,
completeness, and timeliness of their data?
National
Percentage (Count)
Quarterly

32.0% (16)

Every six months
Annually

6.0% (3)
16.0% (8)

Other

46.0% (23)
Total Respondents: 50

Data Use
30. Within 12 months of the end of the diagnosis year with data that are 90% complete, did your
CCR calculate incidence count 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?
National (Yes)
Percentage (Count)
64.0% (32)

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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).
National (Yes)
Percentage (Count)
92.0% (46)

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).
National (Yes)
Percentage (Count)
82.0% (41)

31c. If Yes, indicate what information was included in the report: Check all that apply.
National (Yes)
Percentage (Count)
Screening-amenable Cancers

97.6% (40)

Tobacco-related Cancers

87.8% (36)

Obesity-related Cancers

68.3% (28)

HPV-related Cancers

85.4% (35)

All the above

61.0% (25)

Other

19.5% (8)
Total Respondents: 50

32a. What is the most current diagnosis year a data file or report is available to the public?
National
Percentage (Count)
2011

2.0% (1)

2013

4.0% (2)

2014

20.0% (10)

2015

68.0% (34)

2016

6.0% (3)

Total Respondents: 50

32b. In what format is this report available? Check all that apply.
National (Yes)
Percentage (Count)
Hard (paper) copy

32.0% (16)

Electronic word-processed file

66.0% (33)

Web page/query system

74.0% (37)
Total Respondents: 50

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33. Indicate the number of times the CCR, state health department, or its designee used registry
datafor planning and evaluation of cancer control objectives for each category in the table below:
National
Average (Range)
Comprehensive cancer control detailed incidence/mortality estimates: Number per Year

2012.7 (0 - 99999)

Detailed incidence/mortality by stage and geographic area: Number per Year

2030.3 (0 - 99999)

Collaboration, as defined in DP17-1701, with cancer screening programs for breast,
colorectal, or cervical cancer: Number per Year

2005.1 (0 - 99999)

Health event investigation(s): Number per Year

2009.0 (0 - 99999)

Needs assessment/program planning (e.g. Community Cancer Profiles): Number per Year

2008.7 (0 - 99999)

Program evaluation: Number per Year

2003.7 (0 - 99999)

Epidemiologic studies: Number per Year

2014.2 (0 - 99999)

Other, describe: Number per Year

4169.8 (0 - 68222)
Total Respondents: 50

34a. Have any of the above uses of data been included in a journal publication in the last two
years?
National (Yes)
Percentage (Count)
58.0% (29)

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:
National (Yes)
Percentage (Count)
Publications (e.g.; journal articles, annual report, other reports)

84.0% (42)

Web site

82.0% (41)

Presentations, posters

88.0% (44)

Release of data

52.0% (26)

Education meeting, training program, conference

86.0% (43)

Press releases, statements
Requests for proposals, bid solicitations

16.0% (8)
22.0% (11)

None

2.0% (1)

Other

4.0% (2)
Total Respondents: 50

36. Does your CCR use United States Cancer Statistics (USCS) data when performing comparative
analyses?

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National
Percentage (Count)
No
Yes

84.0% (42)

Explain:
Total Respondents: 50

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).
National (Yes)
Percentage (Count)
82.0% (41)

37b. If Yes, the Advisory Committee includes representation from: Check all that apply:
National (Yes)
Percentage (Count)
Representatives from all cancer prevention and control components:

72.0% (36)

Vital Statistics

22.0% (11)

Hospital cancer registrars

70.0% (35)

American Cancer Society

64.0% (32)

Clinical-laboratory personnel

20.0% (10)

Pathologists

38.0% (19)

Clinicians

68.0% (34)

Researchers

70.0% (35)

Oncologists

60.0% (30)

American College of Surgeons

38.0% (19)

All of the above

6.0% (3)

Other

26.0% (13)
Total Respondents: 50

37c. If you have an Advisory Committee, how often does this group convene, including in-person
and teleconferences? Check only one
National
Percentage (Count)
Quarterly

36.0% (18)

Annually

8.0% (4)

Biannually
Other

16.0% (8)
40.0% (20)

Total Respondents: 50

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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:
National (Yes)
Percentage (Count)
Provides assistance in staging NBCCEDP cases

70.0% (35)

Regular meetings with NBCCEDP and NCCCP departmental staff

86.0% (43)

Provides training/technical assistance to NBCCEDP and NCCCP staff

70.0% (35)

Provides data to NBCCEDP and NCCCP

98.0% (49)

Provides technical material for publications to NBCCEDP and NCCCP

64.0% (32)

Provides subject matter expertise to NBCCEDP and NCCCP

84.0% (42)

Data linkages

98.0% (49)

Partner on collaborative projects

86.0% (43)

All of the above

34.0% (17)

Other

6.0% (3)

None of the above

2.0% (1)
Total Respondents: 50

39. With which other Department of Health programs does your CCR collaborate? Check all that
apply.
National (Yes)
Percentage (Count)
Tobacco Control

86.0% (43)

Oral Health

44.0% (22)

Diabetes

42.0% (21)

Heart Disease and Stroke Prevention

44.0% (22)

Asthma

18.0% (9)

Physical Activity and Nutrition/Obesity

56.0% (28)

Radiation Control

28.0% (14)

Environmental Health

78.0% (39)

Infectious disease (HIV/AIDS, HPV, hepatitis)

70.0% (35)

Immunization

66.0% (33)

All of the above

12.0% (6)

Other

18.0% (9)
Total Respondents: 50

Advanced Activities
40. If your CCR receives electronic pathology reports, in which format are these received? Check
all that apply.

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National (Yes)
Percentage (Count)
NAACCR, HL7 Format (Volume V), Version 2.x

78.0% (39)

NAACCR, Pipe Delimited Format (Volume V), Version 2.x

26.0% (13)

NAACCR, HL7 Format (NAACCR Volume II, Version 11, Chapter VI)

16.0% (8)

NAACCR, Pipe Delimited Format (NAACCR Volume II, Version 10,Chapter VI)
Other

4.0% (2)
28.0% (14)

Not applicable

10.0% (5)
Total Respondents: 50

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.
National (Yes)
Percentage (Count)
Pathology laboratory reporting

70.0% (35)

Physician disease reporting

34.0% (17)

Other healthcare data reporting
None of the above

2.0% (1)
26.0% (13)

Total Respondents: 50

42. Does your CCR conduct at least one of the following advanced activities? Check all that apply
National (Yes)
Percentage (Count)
Survival analysis

64.0% (32)

Quality of care studies

24.0% (12)

Clinical Studies

14.0% (7)

Publication of research studies using registry data

60.0% (30)

Geo-coding to latitude and longitude to enable mapping

90.0% (45)

Other healthcare data reporting

26.0% (13)

Other innovative uses of registry data such as Survivorship Care Plan
None of the above

12.0% (6)
2.0% (1)

Total Respondents: 50

43. Does your registry have a system in place for early case capture (rapid case ascertainment)?
National (Yes)
Percentage (Count)
36.0% (18)

44. If Yes, is early case capture performed for:

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National (Yes)
Percentage (Count)
All cases

12.0% (6)

Subset of cases (eg. Pediatric Cancer)

16.0% (8)

Special Studies

14.0% (7)

Other

4.0% (2)
Total Respondents: 50

45a. How often does your CCR link to the National Death Index (NDI)? Please check only one. (If
Never, skip to question 46.):
National
Percentage (Count)
Every year

70.0% (35)

Every other year

12.0% (6)

Every 3 - 5 years
Never

12.0% (6)

Other

6.0% (3)
Total Respondents: 50

45b. For which of the following has the NDI linkage proven to be useful? Check all that apply:
National (Yes)
Percentage (Count)
Survivorship

72.0% (36)

Data quality

82.0% (41)

Research

64.0% (32)

Other

6.0% (3)

Not applicable

45c. Does your CCR update your database following NDI linkage?
National
Percentage (Count)
Yes
No

97.7% (43)
2.3% (1)

Not Applicable, not receiving electronic pathology reports

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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National (Yes)
Percentage
(Count)
State Vital Statistics

98.0% (49)

National Death Index

78.0% (39)

Department of Motor Vehicles

24.0% (12)

Department of Voter Registration

22.0% (11)

Indian Health Service

76.0% (38)

Medicare (Health Care Financing Administration)

10.0% (5)

Medicare Physician Identification and Eligibility Registry
Medicaid

14.0% (7)

CDC’s National Breast and Cervical Cancer and Early Detection Program

92.0% (46)

CDC’s National Colorectal Cancer Screening Program

26.0% (13)

Insurance Claim Databases (Ex.: BC&BS, Kaiser, Managed Care Organization, fee for
service etc.)
Hospital Discharge Database
Hospital Radiation Therapy Dept

8.0% (4)
38.0% (19)
8.0% (4)

Hospital Disease Indices

34.0% (17)

Other

36.0% (18)

None

2.0% (1)
Total Respondents: 50

Contact Info
Send us an e-mail at [email protected]

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12/23/2020