National Program of Cancer Registries Cancer Surveillance System

Save As...

Reset

Attachment 4a
NPCR CSS Submission Specifications

Save As...

Save As...

___________________________________________________

2009 NPCR-CSS
Submission
Specifications

Save As...

Save As...

Table of Contents
___________________________________________________________

2009 NPCR-CSS Submission Specifications
Attachments
Attachment 1

Programs on the NPCR-CSS Utilities Web Site

Attachment 2

Data Items by Diagnosis Year

Attachment 3

2009 Data Edits

Attachment 4

2009 NPCR-CSS Checklist

Attachment 5

File Transfer Instructions

Attachment 6

Overview of Data Security

Attachment 7

2009 NPCR-CSS Data Submission Form

Attachment 8

2009 NPCR-CSS Data Items Not Transmitted Form

Attachment 9

2009 Duplicate Protocol Results

Attachment 10

2009 NPCR-CSS Dataset Participation Agreement

Attachment 11

2009 Registry Follow-Up Sources

Attachment 12

Frequently Asked Questions About the NPCR-CSS
Data Submission

Attachment 13

NPCR and IHS Record Linkage Procedures
Submission Specifications-i
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

2009 NPCR-CSS
Submission Specifications
___________________________________________________________

This document and its attachments outline the reporting requirements for the 2009 data
submission to the National Program of Cancer Registries Cancer Surveillance System (NPCRCSS).
Registries that opt to submit data in Tier I will submit data in two phases: 1) All cases
beginning with your NPCR reference year through December 31, 2006 are to be submitted in
Phase I (November – December 1, 2008); 2) All cases diagnosed January 2007 through
December 2007 are to be submitted in Phase II (January 2009).
NOTE: For the Tier I registries, retain all instructions and attachments for the second
phase of your data submission.
Registries that opt to submit data in Tier II will submit all cases beginning with your NPCR
reference year through December 31, 2007 in January 2009.
Programs and documents relating to the submission of your data are available at the NPCR-CSS
utilities Web site (https://www.npcrcss.org/docserver/). For a description of these programs and
documents, see Attachment 1, Programs on the NPCR-CSS Utilities Web Site.
1.

Report data using ICD–O–3 codes: Convert your pre-2001 ICD–O–2 morphology data
to the corresponding ICD–O–3 codes. Conversion programs are available at
http://seer.cancer.gov/tools/conversion/.

2.

Diagnosis Years: Include cases diagnosed in all residents of your catchment area
beginning with your NPCR reference year (e.g., 1995) through December 31, 2007. For
guidance on residency, refer to Chapter III of NAACCR Standards for Cancer Registries,
Volume II.1 See item #10 for further instructions on submission due dates.

3.

Reportable Diagnoses: All histologies with a behavior code of /2 or /3 (or in some cases
behavior code of /0 [see 3h] or behavior code of /1 [see 3g]) in the International
Classification of Diseases for Oncology, Third Edition (ICD–O–3) are reportable with the
following exceptions or restrictions:2, 3, 4, 5
a. Exclude neoplasms of the skin (C44.0–C44.9) with the following histologies
UNLESS they occur at the mucoepidermoid sites [vagina (C52.9), clitoris (C51.2),
vulva (C51.0–51.9), prepuce (C60.0), penis (C60.9) , and scrotum (C63.2)]:
8000–8005
Neoplasms, malignant, NOS
8010–8046
Epithelial carcinomas
8050–8084
Papillary and squamous cell carcinomas
Submission Specifications-1
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

8090–8110

Basal cell carcinomas

b. Exclude carcinoma in situ of the cervix (C53.0-C53.9, any morphology and /2) after
January 1, 1996.
c. Exclude prostate intraepithelial neoplasia, grade III (PIN III) (C61.9, 8148/2) after
January 1, 2001.
d. Exclude squamous intraepithelial neoplasia, grade III (8077/2) of the following sites:
anus (C21.1, AIN III), cervix (C53, CIN III), vagina (C52.9, VAIN III), and vulvar
(C51, VIN III).
e. If a pathologist reports a case as invasive (/3) and the histology is usually associated
with a benign (/0) or borderline (/1) behavior code, the case is reportable. Include any
appropriate over-ride codes.
f. Include all pilocytic astrocytomas. If necessary, convert behavior code to /3 before
submitting cases.
g. Include all cases as reportable in the year they were diagnosed. For example, those
cases reportable in ICD–O–2 but not ICD–O–3 would be included for diagnosis years
1995-2000 only. However, as noted above, all ICD–O–2 codes should be converted
to the corresponding ICD–O–3 codes prior to submission.
The following histologies should be reported for all cases diagnosed prior to January
1, 2001. These histologies are generally coded to ovary (C56.9), but are not limited
to this primary site.
Descriptive terms and topography codes
Serous cystadenoma, borderline malignancy (C56.9)
Serous tumor, NOS, of low malignant potential (C56.9)
Papillary cystadenoma, borderline malignancy (C56.9)
Serous papillary cystic tumor of borderline malignancy (C56.9)
Papillary serous cystadenoma, borderline malignancy (C56.9)
Papillary serous tumor of low malignant potential (C56.9)
Atypical proliferative papillary serous tumor (C56.9)
Mucinous cystic tumor of borderline malignancy (C56.9)
Mucinous cystadenoma, borderline malignancy (C56.9)
Pseudomucinous cystadenoma, borderline malignancy (C56.9)
Mucinous tumor, NOS, of low malignant potential (C56.9)
Papillary mucinous cystadenoma, borderline malignancy
(C56.9)
Papillary pseudomucinous cystadenoma, borderline malignancy
(C56.9)
Papillary mucinous tumor of low malignant potential (C56.9)

Submission Specifications-2
August 2008
NPCR-CSS 2009 Data Submission

Save As...

ICD–O–3
8442/1
8442/1
8451/1
8462/1
8462/1
8462/1
8462/1
8472/1
8472/1
8472/1
8472/1
8473/1

ICD–O–2
8442/3
8442/3
8451/3
8462/3
8462/3
8462/3
8462/3
8472/3
8472/3
8472/3
8472/3
8473/3

8473/1

8473/3

8473/1

8473/3

Save As...

h. Beginning January 1, 2004, all nonmalignant primary intracranial and central nervous
system tumors (see following table) with a benign (/0) or borderline (/1) behavior
code are reportable, and are to be included in the data submission.1, 2,5 However,
exclude benign and borderline tumors of the cranial bones (C41.0). For further
guidance, please refer to the following table.

Required Sites for Benign and Borderline Primary Intracranial and
Central Nervous System Tumors
General Term
Meninges

Brain

Spinal cord, cranial
nerves, and other
parts of the central
nervous system

Pituitary,
craniopharyngeal
duct, and pineal
gland

Specific Sites
Cerebral meninges
Spinal meninges
Meninges, NOS
Cerebrum
Frontal lobe
Temporal lobe
Parietal lobe
Occipital lobe
Ventricle, NOS
Cerebellum, NOS
Brain stem
Overlapping lesion of brain
Brain, NOS
Spinal cord

Cauda equine
Olfactory nerve
Optic nerve
Acoustic nerve
Cranial nerve, NOS
Overlapping lesion of brain
and central nervous system
Nervous system, NOS
Pituitary gland

C72.1
C72.2
C72.3
C72.4
C72.5
C72.8

Craniopharyngeal duct
Pineal gland

C75.2
C75.3

Submission Specifications-3
August 2008
NPCR-CSS 2009 Data Submission

Save As...

ICD-O-3 Topography
Code
C70.0
C70.1
C70.9
C71.0
C71.1
C71.2
C71.3
C71.4
C71.5
C71.6
C71.7
C71.8
C71.9
C72.0

C72.9
C75.1

Save As...

4.

Data Items: Include all data items listed in Attachment 2, Data Items by Diagnosis
Year. Use definitions and codes from Chapters IX and X of NAACCR Standards for
Cancer Registries, Volume II.1
a. Data items new to this submission or moved to ―coordinated core‖ from ―advanced‖
surveillance activities are noted in bold.
b. Unless otherwise noted, leave missing or uncollected data items blank.
c. If state law prohibits the release of all or some county codes, please recode the county
code to ―000‖ for relevant case records and convert county codes to the derived Rural
Urban Continuum variables, Rural-Urban Continuum/Beale Code 1993 [NAACCR
data item #3300] and Rural-Urban Continuum/Beale Code 2003 [NAACCR data item
#3310]. To download a copy of the Rural-Urban Continuum Program, please visit the
NAACCR Web site under the link ―Data Analysis Tools‖:
http://www.naaccr.org/index.asp?Col_SectionKey=11&Col_ContentID=463.
The NPCR County at Dx edit will accept code ―000‖ as a valid code. Use code ―999‖
for unknown or missing county information. Do not leave this variable blank. Please
note that the use of code ―998‖ (out of state resident) will generate an edit error as
these cases are not reportable to NPCR.
d. For the Great Circle Distance Calculation program, please visit the NAACCR Web
site under the link ―Data Analysis Tools‖:
http://www.naaccr.org/index.asp?Col_SectionKey=11&Col_ContentID=463. Please
note that this variable is considered ―advanced‖ and optional.
e. For cases diagnosed beginning January 1, 2006 and after, please include Follow-Up
Source Central [NAACCR data item # 1791]. For cases diagnosed prior to 2006, this
data item may be blank.
f. Treatment data items are to be submitted by year of diagnosis according to the
following table.

Submission Specifications-4
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

Coordinated Call for Data Treatment Data Item Required Status
1995-2000
2001-2002
2003-2005
2006-2007
Date of Initial Rx—SEER [1260]
Submit
either SEER
or COC
As available
As available As available
field; At
Date of 1st Crs Rx—COC [1270]
least one of
these items
must be
As available
As available As available
completed
Rx Summ—Surg Prim Site [1290]
Required, as
As available
available
Required
Required
Rx Summ—Scope Reg LN Sur
Required, as
[1292)
As available
available
Required
Required
Rx Summ—Surg Oth Reg/Dis [1294]
Required, as
As available
available
Required
Required
Reason for No Surgery [1340]
As available
As available As available
Required
RX Summ—Radiation [1360]
As available
As available As available
As available
RX Summ—Surg/Rad Seq [1380]
As available
As available As available
Required
Rx Summ—Chemo [1390]
As available
As available As available
Required
Rx Summ—Hormone [1400]
As available
As available As available
Required
Rx Summ—BRM [1410]
As available
As available As available
Required
Rx Summ—Other [1420]
As available
As available As available
Required
First Course Calc Method [1500]
As available* As available* As available* Required
Rad—Regional Rx Modality [1570]
As available
As available As available
Required
Rx Summ—Transplnt/Endocr [3250] As available
As available As available
Required
As available—blanks allowed
Required, as available—blanks allowed
Required—blanks not allowed
As available*—edit associated with this data item does not allow the field to be blank if either Date
of Initial Rx—SEER or Date of 1st Crs Rx—COC is not blank
Treatment First Course

5.

For cases diagnosed beginning January 1, 2004, report the Derived Summary Stage 2000
[NAACCR data item #3020] using the Collaborative Staging (CS) Algorithm version
01.04.00 or later.

6.

Edits: Attachment 3, 2009 Data Edits, contains a list of edits; single field, inter-field,
and inter-record; that will be used to evaluate your data submission.
a. Edits new to this submission or moved from ―advanced‖ to ―coordinated core‖
surveillance activities are noted in bold.

Submission Specifications-5
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

b. Coordinated Core Edits will be used to assess program standards (i.e., percentage of
records passing edits; see item #15).
c. ―Advanced‖ data edits are to assist you in improving the overall quality of NPCRCSS data and are to be run by all registries. Registries are strongly encouraged to
resolve ―advanced‖ edit errors because these edits may become ―coordinated core‖
edits in future submissions. ―Advanced‖ data edits are not used to assess program
standards.
d. Both ―coordinated core‖ and ―advanced‖ inter-record edits will be run at the same
time through the Inter-Record Edits standalone utility program 2009, downloadable
from the utilities Web site (https://www.npcrcss.org/docserver/).
7.

Report Linkage and Algorithm Results:
i. Prior to performing the Indian Health Service (IHS) Linkage and running the
NAACCR Hispanic and Asian/Pacific Islander Identification Algorithm
(NHAPIIA), review your data carefully to make sure that variables used in the
linkages (i.e., SSN, birth date, names, etc.) are complete and valid.
ii. If you have performed the IHS Linkage, report the results in IHSLink
[NAACCR #192]. See Attachment 13, NPCR and IHS Record Linkage
Procedures, for detailed information.
iii. Next, run the NHAPIIA algorithm and place the output for NHIA in column
231 and the output for NAPIIA in column 236-237.
iv. To download a copy of the combined SAS program for NHAPIIA algorithm
and its associated files, please visit the NAACCR Web site under the link
―Data Analysis Tools‖:
http://www.naaccr.org/index.asp?Col_SectionKey=11&Col_ContentID=463
Please contact Joe Rogers at (770) 488-4701 for assistance in obtaining a SAS
license to run the SAS algorithm.

8.

Identification of Duplicate Records Form: Please assess duplicate records in your
database using the NAACCR Protocol for Assessing Duplicate Cases and copy the results
to Attachment 9, Duplicate Protocol Results.

9.

Record Format: Create a file in a NAACCR Record Layout Version 11 (including
versions 11.1, 11.2 and 11.3) that includes only the data items listed in Attachment 2,
Data Items by Diagnosis Year. Do not include data from the Patient-Confidential Section
portion of the record. A file extraction program is available on the NPCR-CSS utilities
Web site (https://www.npcrcss.org/docserver/). Please use your state-specific login to
access this program.
a.

Submissions that include data in the Patient-Confidential Section will not be
accepted, and the registry will be notified.

b. For those registries that have data files in a NAACCR version lower than Version 11
format, you may use a free-standing Windows program that will convert files into
other NAACCR versions. Input files may contain NAACCR version 6, 7, 8, 9, 10 or
their derivatives. Converted output files can be version 7, 8, 9, 10.2, or 11. You can
download a copy of this conversion program from the following Web site:
Submission Specifications-6
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

http://www.cdc.gov/cancer/npcr/tools/registryplus/up_download.htm
10.

Submission Due Dates: Data for the first phase of the Tier I submission can be
submitted during the month of November 2008 (through December 1), holidays
excluded. Data for the second phase of the Tier I submission can be submitted during the
month of January 2009 (through January 30). Data for the Tier II submission can be
submitted during the month of January 2009 (through January 30). Submission hours
are from 8 a.m. EST to 6 p.m. EST, Monday through Friday. If you need extended hours,
contact the NPCR-CSS Help Line at (301-572-0502), and Macro International staff will
try to accommodate your needs.

11.

Preparing and Transmitting Data: Please check the file prior to submission to ensure
that all data years (including 12-month data) and all required data items are included.
Attachment 4, NPCR-CSS Checklist, is provided to help you prepare your data
submission.
Data transmitted to NPCR-CSS are encrypted during transmission. The encryption is
accomplished via Secure Sockets Layer (SSL) strong encryption, the same level of
protection used by e-commerce sites to protect financial transactions.

12.

File Transfer Instructions: Refer to Attachment 5, File Transfer Instructions. Macro
International staff will contact you in early October with your user ID and password for
accessing your state folder on the NPCR-CSS document server.

13.

Data Security: In accordance with the requirements of the 308(d) Assurance of
Confidentiality, Macro International has developed and implemented the NPCR-CSS
Security Plan. Attachment 6, Overview of the Security Plan, is provided.

14.

Transmitting Forms: The following forms are in electronic format at the NPCR-CSS
document server (https://www.npcrcss.org/) log-in page. Choose the ―Submit Forms‖
option before you log in:
Attachment 7
Attachment 8
Attachment 9
Attachment 10
Attachment 11

2009 NPCR-CSS Data Submission Form
2009 Data Items Not Transmitted Form
2009 Duplicate Protocol Results
2009 NPCR-CSS Dataset Participation Agreement
2009 Registry Follow-Up Sources

These forms are available through a secure Web interface, may be completed, and
submitted on-line. Alternatively, the forms may be printed, completed and submitted:
1) to your state folder on the NPCR-CSS document server, or
2) via fax [(301) 961-8537] with attention to Dr. Kevin Zhang, or
3) via postal mail to:
Dr. Kevin Zhang, Cancer Surveillance Project Director
Macro International
7315 Wisconsin Avenue, Suite 400W
Bethesda, MD 20814
Submission Specifications-7
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

15.

Questions about Your Submission: Refer to Attachment 12, Frequently Asked
Questions about the NPCR-CSS Data Submission, or call the NPCR Help Line (301)
572-0502.

Topic
Point of Contact
Technical questions related to data NPCR Help Line
submission
(including
user
ID, (301) 572-0502
password, or accessing the NPCR-CSS
Web site)
Completion of Attachments 7–11 (see Cheryll C. Thomas: (770) 488-3254
#13 above)
Reda Wilson: (770) 488-3245
SAS license to run NHAPIIA algorithm

Joe Rogers (770) 488-4701

15. Data Evaluation: Data will be evaluated according to the following NPCR standards,
and results will be reported in the NPCR-CSS Data Evaluation Reports, which will be
made available in May 2009.
Criteria

NPCR
12-Month
Standard

NPCR
24-Month
Standard

USCSa
Publication
Criteria

Percentage
Completeness of Case
Ascertainmentc
Percentage
Age
Missing
Sex
or
Race
Unknown
County
Percentage Death
Certificate Only
(DCO)d
Unresolved
Duplicates (per
1,000)e
Percentage Passing
Coordinated Core
Editsf

>=90%

>=95%

NA
NA
NA
NA
NA

Measurement
Error

>=90%

U.S.
County
Public-Use
File
Criteriab
>=90%

<=2%
<=2%
<=3%
<=2%
<=3%

<=3%
<=3%
<=5%
NA
<=5%

<=3%
<=3%
<=5%
<=3%
<=5%

-0.4%
-0.4%
-0.4%
-0.4%
-0.4%

NA

<=1

NA

NA

-0.4

>=97%

>=99%

>=97%

>=97%

NA

Submission Specifications-8
August 2008
NPCR-CSS 2009 Data Submission

Save As...

-1.0%

Save As...

Notes
a

United States Cancer Statistics
See NPCR-CSS
Data Release Policy,
on the utilities
Web site
(https://www.npcrcss.org/docserver/).
c
Case completeness estimates will be calculated using the NAACCR method and adjusted
for duplicates if the duplicate rate was derived from a sample of the incidence file.
Adjustment will not occur if duplicates were identified and corrected on the entire
database.
d
The registry must perform death clearance.
e
Based on the results of NAACCR duplicate protocol.
f
Only coordinated core edits will be used to evaluate data.
NA
Not applicable
b

References
1.

2.

3.

4.

5.

Hultstrom D, editor. Standards for Cancer Registries Volume II: Data Standards and
Data Dictionary. Springfield, IL: North American Association of Central Cancer
Registries (Version 11, Tenth Edition, November 2004; Version 11.1 Eleventh Edition,
April 2006; Version 11.2, Twelfth Edition, April 2007; Version 11.3, Thirteenth Edition,
April 2008).
Funding Opportunity Announcement #DP07-703, National Cancer Prevention and
Control Program, CDC, 2007.
Program Announcement #2060, National Cancer Prevention and Control Program, CDC,
1992.
Public Law 102-515. NPCR Home Page: http://www.cdc.gov/cancer/npcr/
npcrpdfs/publaw.pdf.
Johnson CH, Adamo M (eds.), SEER Program Coding and Staging Manual 2007.
National Cancer Institute, NIH Publication number 07-5581, Bethesda, MD 2007, pages
1–4.

Submission Specifications-9
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

Attachment 1
Programs on the NPCR-CSS Utilities Web Site
___________________________________________________________
The following programs have been or will be posted to the NPCR-CSS utilities Web site
(https://www.npcrcss.org/docserver/). Please use your state-specific login to access these
programs. For assistance with these utility programs, please call Macro International at (301)
572-0502.
1. ICD-O-2 to ICD-O-3 Conversion Program—(http://seer.cancer.gov/tools/conversion/).
2. NAACCR Hispanic and Asian/Pacific Islander Identification Algorithm
(NHAPIIA)—This SAS program combines NAACCR Hispanic Identification Algorithm,
version 2.1 (NHIA v2.1) and the NAACCR Asian Pacific Islander Identification Algorithm,
version 1.1 (NAPIIA v1.1). All NPCR registries are required to run this combined SAS
program or equivalent in the 2009 Coordinated Call for Data submission. The output for NHIA
should be placed in column 231 and the output for NAPIIA should be put in columns 236-237;
the columns refer to the NAACCR Record Layout version 11 (including versions 11.1, 11.2
and 11.3). To download a copy of the combined SAS program and its associated files, please
visit the NAACCR Web site under the link “Data Analysis Tools”:
http://www.naaccr.org/index.asp?Col_SectionKey=11&Col_ContentID=463
Please contact Joseph Rogers at (770) 488-4701 for assistance in obtaining a SAS license to
run the SAS program.
3. GenEDITS Plus with the 2009 Combined Edits Metafile—This is an edits program that
contains the edits metafile to run the 2009 Combined edits on NAACCR record layout version
11.2. The program produces summary and detailed reports of core and advanced edit errors.
4. 2009 Combined Edits Metafile—For those registries that prefer to use another edits program,
this download contains the runtime metafile for the 2009 Combined edits.
5. 2009 Coordinated Call for Data Edits Online Help—This program installs Windows help
files containing information that may be useful to registries when preparing their 2009
Coordinated Call for Data submission.
6.

Inter-Record Edits Standalone Program 2009—This program runs SEER and NPCR
inter-record edits on NAACCR Record Layout version 11 (including versions 11.1, 11.2 and
11.3), containing both ICD-O-2 and ICD-O-3 coded cases. The program produces summary
and detailed reports of inter-record errors. The Inter-Records Edits program should be run
after the 2009 combined edits have been run and errors have been corrected.

Attachment 1-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

7. Data Extraction Utility 2009—This is an executable file that integrates three different
extraction applications for different data extraction needs: National Death Index (NDI) linkage,
Indian Health Service (IHS) linkage, and 2009 Coordinated Call for Data. By clicking the tab
labeled ―CSS‖ the user will be prompted to the application to extract data for 2009
Coordinated Call for Data submission. This application will read NAACCR record layout
version 11 (including versions 11.1, 11.2 and 11.3) and write a new ASCII text file in
NAACCR record layout Version 11 that contains only those data items requested for the 2009
submission. Once you execute the program and click the “CSS” tab, a help file that describes
how to use the program is available by clicking “Help” near the bottom of the application
interface.
8. Northcon11 Record Conversion Program—For those registries that have data file in
NAACCR version lower than v11 format, you may use a free-standing Windows program that
will convert files of cancer registry records in NAACCR data formats. Input files may contain
NAACCR version 6, 7, 8, 9, 10, or their derivatives. Converted output files can be version 7,
8, 9, 10.2, or 11. You can download a copy of this conversion program from the following web
site:
http://www.cdc.gov/cancer/npcr/tools/registryplus/up_download.htm
9. NPCR and IHS Record Linkage Procedures – This document contains a detailed description
of the background, objectives and methods/processes involved in linking state incidence data
to the Indian Health Service (IHS) records for more complete cancer case reporting on
American Indians/Alaska Natives.

Attachment 1-2
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 2
Data Items by Diagnosis Year

Record ID and Demographic Section—(Name and [Number])
Record Type [10]
Patient ID Number [20] (unique)
Registry ID [40]
NAACCR Record Version [50]
Address at Dx—State [80]
County at Dx [90]1
Rural-Urban Continuum/Beale Code 1993 [3300]1
Rural-Urban Continuum/Beale Code 2003 [3310]1
Address at Dx—Postal Code [100]
Census Tract 1970/80/90 [110]
Census Cod Sys 1970/80/90 [120]
Census Tract 2000 [130]2
Census Tr Cert 1970/80/90 [364]
Census Tr Certainty 2000 [365]2
Great Circle Distance Calculation [use columns 1399-1428]
Race 1 [160]
Race 2 [161]
Race 3 [162]
Race 4 [163]
Race 5 [164]
Spanish/Hispanic Origin [190]
NHIA Derived Hisp Origin [191]3
IHS Link [192]4
3
NAPIIA [use columns 236-237]
Sex [220]
Age at Diagnosis [230]
Birth Date [240]
Birthplace [250]

Attachment 2-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Required Status
1995–2007
Y
Y
Y
Y
Y
Y1
As needed1
As needed1
Y
Y
Y
Y2
Y
Y2
Optional
Y
Y
Y
Y
Y
Y
Y3
Y4
3
Y
Y
Y
Y
Y

Save As...

Cancer Identification Section—(Name and [Number])
Sequence Number—Central [380]
Date of Diagnosis [390]
Primary Site [400]
Laterality [410]
Grade [440]
Site Coding Sys—Current [450]
Morph Coding Sys—Current [470]
Diagnostic Confirmation [490]
Type of Reporting Source [500]
Histologic Type ICD-O-3 [522]5
Behavior Code ICD-O-3 [523]5

Required Status
1995–2007
Y
Y
Y
Y
Y
Y
Y
Y
Y
Y5
Y5

ICD-O-3 Conversion Flag [2116]5

Date of Initial Rx—SEER [1260]6

Y5
Required Status
1995–2007
Y6

Date of 1st Crs Rx—COC [1270]6

Y6

Rx Summ—Surg Prim Site [1290]7

Y7

Rx Summ—Scope Reg LN Sur [1292]7

Y7

Rx Summ—Surg Oth Reg/Dis [1294]7

Y7

Reason for No Surgery [1340]7

Y7

RX Summ—Radiation [1360]7

Y7

RX Summ—Surg/Rad Seq [1380]7

Y7

Rx Summ—Chemo [1390]7

Y7

Rx Summ—Hormone [1400]7

Y7

Rx Summ—BRM [1410]7

Y7

Rx Summ—Other [1420]7
First Course Calc Method [1500]

Y7

Rad—Regional Rx Modality [1570]7

Y7

Treatment First Course Section—(Name and [Number])

Rx Summ—Transplnt/Endocr [3250]

Y7
7

Attachment 2-2
August 2008
NPCR-CSS 2009 Data Submission
Save As...

7

Y

Save As...

SEER Summary Stage 2000 [759]8

Required Status
1995–2007
Y8

SEER Summary Stage 1977 [760]8

Y8

Stage/Prognostic Factors Section—(Name and [Number])

CS Tumor Size [2800]9

As available9

CS Extension [2810]9

Y9

CS Lymph Nodes [2830]9

Y9

CS Mets at DX [2850]9

Y9

CS Site-Specific Factor 1 for C38.4 (pleura) [2880]9

Y9

CS Site-Specific Factor 3 for C61.9 (prostate) [2900]9

Y9

CS Version 1st [2935]9

Y9

CS Version Latest [2936]9

Y9

Derived SS2000 [3020]9

Y9

Derived SS2000—Flag [3050]

10

Follow-Up/Recurrence/Death Section—(Name and [Number])
Date of Last Contact [1750]
Vital Status [1760]

As available11

Follow-Up Source [1790]
Follow-Up Source Central [1791]
Cause of Death [1910]
ICD Revision Number [1920]
Over-Rides/Conversion/System Admin. Section—(Name and [Number])
Over-Ride Age/Site/Morph [1990]
Over-Ride SeqNo/DxConf [2000]
Over-Ride Site/Lat/SeqNo [2010]
Over-Ride Surg/Dxconf [2020]
Over-Ride Site/Type [2030]
Over-Ride Histology [2040]
Over-Ride Report Source [2050]
Over-Ride Ill-define Site [2060]
Over-Ride Leuk, Lymphoma [2070]
Over-Ride Site/Behavior [2071]
Over-Ride Site/Lat/Morph [2074]

Attachment 2-3
August 2008
NPCR-CSS 2009 Data Submission
Save As...

10

Y
Required Status
1995–2007
Y
Y
Y11
Y
Y
Required Status
1995–2007
Y
Y
Y
Y
Y
Y
Y
Y
Y
Y
Y

Save As...

NOTES:
Shaded items denote variables that are considered advanced surveillance data. Non-shaded variables denote
coordinated core surveillance data.
Data items new to this submission or having a status change are noted in bold.
The data item names and numbers are those used in NAACCR Volume II, Version 11.
Status key: Y = Yes
1

Code ―999‖ for unknown and invalid. Do not include cases with code ―998‖ in the submission file. If State
law precludes the registry from identifying specific counties on a file of individual records, recode all valid
county codes to ―000‖ and convert county codes to the derived Rural Urban Continuum variables. See
Submission Specifications document for more details.
2

Use of this field is recommended for reportable cases diagnosed in 1998 and later and required for reportable
cases diagnosed in 2003 and later.
3

Report the results from the NHAPIIA SAS Program. See the Submission Specifications document and/or
Atachment 1 for more details. Please note that code 9, unknown, is not a valid code for NHIA data item.
4

Report the results of cases submitted for IHS linkage. See the Submission Specifications document and/or
Attachment 13 for further details.
5

For reportable cases diagnosed in 2001 or later, data should be coded using the ICD–O–3 manual, and data
should be submitted with these original ICD–O–3 values. For reportable cases diagnosed before 2001, data
should be coded using the ICD–O–2 manual. Prior to submission, convert these ICD–O–2 codes to ICD–O–3
codes and use the ICD–O–3 Conversion Flag [2116] to document the conversion.
6

Submit either the SEER or COC field; for reportable cases diagnosed prior to 2006, as available. For cases
diagnosed 2006 and later, at least one of these data items must be completed.
7
For reportable cases diagnosed prior to 2001, as available. For all other years, please refer to the Submission
Specifications, Section 4.f. for details.
8

For reportable cases diagnosed prior to 2001, code using SEER Summary Staging Guide 1977. For
reportable cases diagnosed in 2001–2003, code using SEER Summary Staging Manual 2000.
9

For reportable cases diagnosed in 2004 and later, this is used to derive, or is the derived, "Summary
Stage 2000‖ from the CS algorithm.

10

For reportable cases diagnosed 2004 and later, this item is the flag to indicate whether the ―Summary Stage
2000‖ was derived from the CS algorithm.
11

For reportable cases diagnosed 2006 and later, Follow-Up Source Central [1791] is required. For cases
diagnosed prior to 2006, Follow-Up Source [1790] should be submitted as available.

Attachment 2-4
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 3
2009 Data Edits
COORDINATED CORE EDITS
Single Field Edits
Addr at Dx—State
Age at Diagnosis
Behavior ICD-O-3 Conversion
Birth Date
Birthplace
County at DX1
CS Extension
CS Lymph Nodes
CS Mets at DX
CS Site-Specific Factor 1
CS Site-Specific Factor 3
CS Tumor Size
CS Version 1st
CS Version Latest
Date of Diagnosis
Date of 1st Crs Rx—COC2
Date of Initial Rx—SEER2
Derived SS2000
Derived SS2000-Flag
Diagnostic Confirmation
3
First Course Calc Method
Grade
Histologic Type ICDO3 Conversion
ICD-O-3 Conversion Flag
IHS Link
Laterality
Morph Coding Sys—Current
NAACCR Record Version
NAPIIA
NHIA Derived Hisp Origin
Patient ID Number
Primary Site
Race 1
Race 2
Race 3
Race 4
Race 5
Rad—Regional Rx Modality
Reason for No Surgery
Record Type
Registry ID

(NAACCR)
(SEER AGEDX)
(NAACCR)
(NAACCR DATEEDIT)
(COC)
(NPCR)
(CS)
(CS)
(CS)
(CS)
(CS)
(CS)
(CS)
(CS)
(NAACCR DATEEDIT)
(NPCR)
(NPCR)
(CS)
(CS)
(SEER DXCONF)
(SUBM)
(COC)
(NAACCR)
(NAACCR)
(NPCR)
(SEER LATERAL)
(NAACCR)
(NAACCR)
(SUBM)
(NAACCR)
(SEER CASENUM)
(SEER SITE)
(SEER RACE)
(NAACCR)
(NAACCR)
(NAACCR)
(NAACCR)
(NPCR)
(NPCR)
(NAACCR)
(SUBM)
Attachment 3-1
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

RuralUrban Continuum 1993
RuralUrban Continuum 2003
RxSumm—BRM
RxSumm—Chemo
RxSumm—Hormone
RxSumm—Other
RX Summ—Radiation
RxSumm—Scope Reg LN Surg
RxSumm—Surg Oth Reg/Dis
RxSumm—Surg Prim Site
RxSumm—Surg/Rad Seq
RxSumm—Transplnt/Endocr
Sequence Number—Central
Sex
Site Coding Sys—Current
Spanish/Hispanic Origin
Summary Stage 1977
Summary Stage 2000
Type of Reporting Source

(NAACCR)
(NAACCR)
(NPCR)
(NPCR)
(NPCR)
(NPCR)
(SUBM)
(SEER SCOPE)
(SEER SURGOTH)
(SEER SURGPRIM)
(NPCR)
(NPCR)
(SEER SEQUENC)
(SEER SEX)
(NAACCR)
(SEER SPANORIG)
(NAACCR)
(NAACCR)
(SEER RPRTSRC)

COORDINATED CORE EDITS
Inter-Field Edits
Age, Birth Date, Date of Diagnosis
Age, Primary Site, Morphology ICDO3—Adult
Age, Primary Site, Morphology ICDO3—Pediatric
Age, Primary Site, Morphology ICDO3
Behav ICDO3, Date of DX, ICDO3 Conv Flag
Behavior Code ICDO3, Seq Num--Central
Behavior ICDO3, Site, Histology ICDO3
Behavior ICDO3, Summary Stage 1977
Behavior ICDO3, Summary Stage 2000
Birth Date, Date of Diagnosis
County at DX, Addr at DX--State
CS Extension, CS Lymph Nodes, CS Mets at DX
CS Extension, CS Tumor Size, Site, Hist ICDO3
CS Extension, Hematopoietic
CS Extension, Primary Site, Behavior ICDO3
CS Extension, Primary Site, Histol ICDO3
CS Extension, Renal Pelvis/Ureter Schema
CS Items, Date of DX
CS Items, DX Pre-2004
CS Items, Type Reporting Source
CS Lymph Nodes, Primary Site, Histol ICDO3
CS Mets at DX, Primary Site, Histol ICDO3
CS SSF 1, Primary Site, Histol ICDO3
CS SSF 3, Primary Site, Histol ICDO3
CS Tumor Size, Primary Site, Histol ICDO3
CS Tumor Size, Site, Histol ICDO3
CS Version 1st, CS Version Latest
Date of 1st Crs RX--COC, Date Init RX--SEER
Attachment 3-2
August 2008
NPCR-CSS 2009 Data Submission
Save As...

(NAACCR IF13)
(SEER)
(NPCR)
(SEER IF15)
(SEER IF87)
(SEER IF114)
(NAACCR)
(NAACCR)
(NAACCR)
(NAACCR IF47)
(SUBM)
(CS)
(CS)
(CS)
(CS)
(NAACCR)
(CS)
(NPCR)
(SUBM)
(NPCR)
(NAACCR)
(NAACCR)
(NAACCR)
(NAACCR)
(NAACCR)
(CS)
(CS)
(SUBM)

Save As...

Date of 1st Crs Rx—COC, Date of Dx
Date of Init Rx—SEER, Date of Dx
Derived Items, Date of DX
Derived Items, DX Pre-2004
Derived SS2000-Flag, Derived SS2000
Diagnostic Confirm, Seq Num—Central
Diagnostic Confirmation, Behavior ICDO3
Diagnostic Confirmation, Histology ICDO3
Edit Over-rides
First Crs Calc Meth, Date 1st Crs RX
Hemato ICD-O-3, Summ Stg 1977
Hist ICDO3, Date of DX, ICDO3 Conv Flag
Laterality, Primary Site
Laterality, Primary Site, Morphology ICDO3
Lymphoma ICD-O-3, Site, Summ Stg 1977
Morphology—Type and Behavior ICDO3
Obsolete Codes - CS Extension
Obsolete Codes - CS Lymph Nodes
Obsolete Codes - CS Mets at DX
Obsolete Codes - CS SSF 3
Primary Site, Behavior Code ICDO3
Primary Site, Histology, Behav ICDO3
Primary Site, Laterality
Primary Site, Morphology—Imposs ICDO3
Primary Site, Morphology—Type, Beh ICDO3
Race 1, Race 2, Race 3, Race 4, Race 5
Race 2, Date of Dx
Race 3, Date of Dx
Race 4, Date of Dx
Race 5, Date of Dx
Rad--Regional RX Modality, Date of Diagnosis
Reason for No Surgery, Date of DX
RX Summ—BRM, Date of DX
RX Summ—Chemo, Date of DX
RX Summ—Hormone, Date of DX
RX Summ—Other, Date of DX
RX Summ—Scope Reg LN Sur, Date of DX
RX Summ—Scope Reg LN Sur, Site, ICDO3
RX Summ—Surg Oth Reg/Dis, Date of DX
RX Summ—Surg Prim Site, Date of DX
RX Summ—Surg Prim Site, Diag Conf
RX Summ—Surg Prim Site, Primary Site, ICDO3
RX Summ—Surg/Rad Seq, Date of DX
RX Summ—Transplnt/Endocr, Date of DX
Seq Num—Central, Prim Site, Morph ICDO3
Sex, Primary Site
Summary Stage 1977, Date of Diagnosis
Summary Stage 1977, Summary Stage 2000
Summary Stage 1977, Type of Reporting Source
Summary Stage 2000, Date of Diagnosis
Attachment 3-3
August 2008
NPCR-CSS 2009 Data Submission
Save As...

(COC)
(NAACCR IF18)
(NPCR)
(SUBM)
(CS)
(SEER IF23)
(SEER IF31)
(SEER IF48)
(SEER REVIEWFL)
(SUBM)
(NAACCR)
(SEER IF86)
(NAACCR IF24)
(SEER IF42)
(NAACCR)
(SEER MORPH)
(SEER IF146)
(SEER IF147)
(SEER IF148)
(SEER IF150)
(SEER IF39)
(NAACCR)
(SEER IF82)
(SEER IF38)
(SEERIF25)
(SEER IF93)
(SEER IF89)
(SEER IF90)
(SEER IF91)
(SEER IF92)
(NPCR)
(NPCR)
(NPCR)
(NPCR)
(NPCR)
(NPCR)
(NPCR)
(SEER IF109)
(NPCR)
(NPCR)
(SEER IF76)
(SEER IF108)
(NPCR)
(NPCR)
(SEER IF22)
(SEER IF17)
(NAACCR)
(NAACCR)
(NAACCR)
(NAACCR)

Save As...

Summary Stage 2000, Site, Hist ICDO3, Rpt Srce
Surgery, Rad, Surg/Rad Seq
Type of Report Srce (DC/AO), Diag Conf
Type of Report Srce (DC), Seq Num—Cent, ICDO3
Unknown Site Hist ICDO3, Summary Stage 1977
Unknown Site, Laterality
COORDINATED CORE EDITS

(NAACCR)
(COC)
(SEER IF05)
(SEER IF04)
(NAACCR)
(SEER IF138)

Inter-Record Edits4
Verify Place of Birth Same on All Records for a Patient
Verify Date of Birth Same on All Records for a Patient
Verify Sequence Number-Central of 00-59 using Age at Diagnosis
Verify Sequence Number-Central of 60-87 Using Age at Diagnosis

(SEER IR01)
(SEER IR02)
(SEER IR03A)
(SEER IR03B)

Verify Race Same on All Records for a Patient

(SEER IR04)

Verify Sex Same on All Records for a Patient
Verify Sequence Number-Central of 00-59 Using Dates of Diagnosis
Verify Sequence Number-Central of 60-87 Using Dates of Diagnosis
Verify Sequence Number-Central not in Conflict with Number of Primaries in
Sequence Range of 00-59, and 99
Verify Sequence Number-Central Not in Conflict with Number of Primaries in
Sequence Range of 60-88
Verify Same Primary Not Reported Twice for a Person
Verify No Multiple Bladder Primaries Reported for a Person

(SEER IR05)
(SEER IR06A)
(SEER IR06B)

Verify No Multiple Prostate Primaries Reported for a Person
Verify No Multiple Kaposi Sarcoma Primaries Reported for a Person
Verify Spanish Surname or Origin Same on all Records for a Person
Verify NHIA Derived Hisp Origin Same on all Records for a Person
Verify IHS Linkage Same on all Records for a Person
ADVANCED DATA EDITS
Single Field Edits
Addr at Dx—Postal Code
Cause of Death
Census Cod Sys 1970/80/90
Census Tr Cert 1970/80/90
Census Tr Certainty 2000
Census Tract 1970/80/90
Census Tract 2000
Date of Last Contact
Follow-up Source
Follow-up Source Central

(SEER IR07B)
(SEER IR09)
(SEER IR13A)
(SEER IR13B)
(SEER IR13C)
(SEER IR14)
(SEER IR15)
(NPCR IR01)

(COC)
(SEER COD)
(SEER RESSYST)
(SEER CENSCERT)
(SEER)
(SEER TRACT)
(SEER)
(NAACCR DATEEDIT)
(COC)
(NAACCR)

ICD Revision Number
Vital Status
ADVANCED DATA EDITS
Inter-Field Edits
Age, Histologic Type, COD ICDO3
Census Tract 1970/80/90, Census Tract Coding Sys
Date of 1st Crs Rx—COC, Date of Last Contact
Attachment 3-4
August 2008
NPCR-CSS 2009 Data Submission
Save As...

(SEER IR07A)

(SEER ICDCODE)
(COC)

(SEER IF43)
(SEER IF45)
(COC)

Save As...

Date of Init Rx—SEER, Date Last Cont
Date of Last Contact, Date of Diag.
Follow-up Source Central, Date of DX
Follow-up Source, Vital Status
ICD Revision Number, Cause of Death

(NAACCR IF35)
(NAACCR IF19)
(NPCR)
(COC)
(SEER IF37)

ICD Revision, Vital Stat, Date Last Contact

(NPCR)

Type of Report Srce (DC/AO), COD
Type of Report Srce (DC/AO), Date of Dx
Type of Report Srce (DC/AO), Vit Stat
ADVANCED DATA EDITS
Inter-Record Edits
Verify Date of Follow-up Same on All Records for a Patient
Verify Vital Status Same on All Records for a Patient
Verify Cause of Death Same on All Records for a Patient
Verify Type of Reporting Source and Sequence Number—Central 00-59
Verify Type of Reporting Source and Sequence Number—Central 60-87

(SEER IF09)
(SEER IF02)
(COC)

(SEER IR08)
(SEER IR10)
(SEER IR11)
(SEER IR16A)
(SEER IR16B)

NOTES:
Edits new, or having a status change, to this submission are noted in bold.
See the NPCR-CSS utilities Web site (https://www.npcrcss.org/docserver/) for the edits programs.
Edits labeled NPCR-SUBM are specifically for the NPCR-CSS submission and should be run only on the
submission file.
1

This edit has been modified to allow “000” as a valid code for recode if state law prohibits the release of county
codes.
2
Central registries may code either the SEER or COC data item; the appropriate edit will be run on the
completed field.
3
Required if either Date of Initial Rx—SEER or Date of 1st Crs Rx—COC is submitted, blanks allowed only if
both of these date fields are blank.
4
Inter-record edit errors from these IR-edits are required to be resolved and will be used to assess program
standards.

Attachment 3-5
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 4
2009 NPCR-CSS Checklist
___________________________________________________________

For registry purposes only. Do not submit.
Place a checkmark () next to the tasks completed.
Please note that the order of tasks may vary.


Task
Identify duplicate records in your database using the NAACCR Protocol for
Assessing Duplicate Cases (1995 or your NPCR reference year–2006 and 2006
alone) and then copy your Duplicate Protocol Assessment results to Attachment
9.
Run the ICD-O-2 to ICD-O-3 conversion program on cases diagnosed prior to
2001 if you have not completed the conversion for your state data.
If applicable, have the Indian Health Service (IHS) perform the IHS linkage on
your state data and update your database with the linkage information.
Run the NAACCR Hispanic and Asian/Pacific Islander Identification
Algorithm to assign the derived Hispanic ethnicity and Asian/Pacific Islander
race to incident cases.
Run the edits program using the 2009 NAACCR/NPCR Combined edits
metafiles and resolve single field and inter-field edit errors.
Run the inter-record edits standalone program 2009 and resolve edit errors.
Extract the data file; verify that all required diagnosis years are included
(i.e., from your NPCR reference year through 2007).
Follow the steps for creating and transmitting data and send the data file to
Macro International by November 30, 2008.
Complete Attachments 7-11 via the secure web interface from the CSS login
page, or submit these forms via CSS document server, or fax, or mail to Macro
International.

Attachment 4-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 5
File Transfer Instructions
___________________________________________________________

Data transmitted to NPCR-CSS is encrypted during transmission to render it useless to anyone
who might attempt to intercept the transmission. The encryption is accomplished via Secure
Socket Layer strong encryption—the same level of protection used by e-commerce sites to
protect financial transactions.
NPCR-CSS staff at Macro International will call each program in early December to provide the
login, user ID, and password and to answer questions.
We will accommodate on-line form completion and submission this year. For data submission, it
is recommended that each state use PKZIP or WINZIP to compress its files prior to posting them
to the secure web site.

Instructions:
1. Open an Internet browser capable of 128-bit encrypted communication. Some, but not all,
versions of Microsoft (MS) Internet Explorer (5.x and higher) and Netscape (4.x and higher)
support 128-bit encryption. If your browser is not capable of 128-bit encrypted
communication, you will be instructed on how to download the required browser software.
2. In the address or location line of your browser, type https://www.npcrcss.org/ and press
Enter.
3. A Security Warning page will pop up. Accept the security certificate by clicking on the Yes
button (if using MS Internet Explorer) or the OK button (if using Netscape). The login screen
will appear. Choose from the options by checking a radio button for either Forms submission
or Data upload. Enter your user-specific ID and password and click on the Login button.
4. If you choose to submit the forms, you will be directed to a secure area where all of the
required forms (i.e., Attachments 7-11) are available so that you can fill them in on-line and
submit them through a web application. For each form completed, a PDF version of the
completed form will be generated after you click on the ―Submit‖ button. A copy of the PDF
file will be automatically delivered to your 2009 folder on the CSS document server for you
to download. Download a copy for your own record if you wish.
5. When you choose to upload your dataset, you will see a folder that appears on the left-hand
side of the screen labeled with your state’s name. In order to upload your data file, open this
Attachment 5-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

folder and click on the 2009 Submission folder that appears under your state’s folder. Next,
click on the yellow arrow labeled Upload a File on the right-hand side of the screen.
A new page will appear with the title Document Upload. You will need to enter a title for the
document and then click on the Browse button to locate the data file on your local hard drive
or network drive. For naming your document, begin the file name with the two-character
state postal abbreviation, then use the year range of the file and NAACCR layout version.
For example, use the name GA95V11 for 1995 Georgia data in Version 11.1 and
GA9507V11 for 1995–2007 Georgia data in Version 11.1. Once you have selected the file
and entered any descriptive text that you want to include with the submission, click on the
Continue button.
6. Depending on the size of the file and the speed of your Internet connection, the file uploading
may take a few seconds to 30 minutes or more. You will receive a confirmation message
after the file has been successfully uploaded.
7. Click on Logout in the upper right-hand corner, and you will return to the login screen.

Attachment 5-2
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 6
Overview of Data Security
___________________________________________________________

The NPCR-CSS project data reside on a dedicated server at Macro International. To ensure the
security and confidentiality of project data, the following provisions have been incorporated into
the Macro International NPCR-CSS Security Plan in accordance with the requirements of the
Assurance of Confidentiality.
The NPCR-CSS server is housed in a secure facility at Macro International’s Bethesda office
with a guard on duty in the lobby 24 hours a day. Elevator and stairwell access is controlled by
card key. The server resides on its own local area network (LAN) behind Macro International’s
firewall.


Access to the NPCR-CSS server is limited to authorized Macro International project staff
(see below). It is password protected on its own security domain. No one, including
nonproject staff at Macro International, is allowed access to the NPCR-CSS data.



All Macro International project staff must sign a confidentiality agreement before passwords
and keys are assigned. All staff must pass background checks appropriate to their
responsibilities for a public trust position.



NPCR-CSS data that are submitted electronically are encrypted during transmission from the
States. They arrive on a document server behind Macro International’s firewall. Each state
has its own directory location so that no state has access to another state’s data. The data are
moved automatically from the document server to the NPCR-CSS server.



Receipt and processing logs are maintained to document data receipt, file processing, and
report production. All reports and electronic storage media containing NPCR-CSS data are
stored under lock and key when not in use and will be destroyed when no longer needed.



A comprehensive security plan has been developed by Macro International’s security team.
The security team consists of Donald McMaster, Business Steward; Kevin Zhang, Project
Director; Leo Shen, Security Officer; David Radune, Database Administrator; and Gretchen
Stanton, LAN and WAN Security Steward. All project staff receive annual security
awareness training covering security procedures. The Macro International project security
team oversees operations to prevent unauthorized disclosure of the NPCR-CSS data.



Periodic (currently quarterly, but no less than once a year) review and update of Macro
International security processes will be conducted to adjust for rapid changes in computer
Attachment 6-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

technology and to incorporate advances in security approaches. The security plan will be
amended as needed to maintain the continued security and confidentiality of NPCR-CSS
data.

Macro International
Authorized Project Staff
Staff Member

Position

Donald McMaster, M.B.A., M.S.
Kevin Zhang, Ph.D.
Leo Shen, M.B.A.
David Radune, B.S.
Gretchen Stanton, M.S.
Qiming He, Ph.D.
Yuan Ren, Ph.D.
Suling Huang, M.S.P.H., CTR
Jagruti Rana, M.S.
Phllips Schaeffer, M.S.
Jonathan Stanger, M.P.A.
Shaobin Xu, M.S.

Business Steward
Project Director
Deputy Director/Security Officer
Development Manager/Database
Administrator
LAN and WAN Security Steward
QA Manager/Sr. Programmer Analyst
Data and Statistical Manager/Sr.
Statistical Programmer
QA Specialist/Data Analyst
Sr. Developer
Sr. SAS Programmer
SQL Programmer
Programmer Analyst

Attachment 6-2
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 7
2009 NPCR-CSS Data Submission Form
_________________________________________________________________________________________
Registry name: _____________________________________________ Date: ___________________________________________
Name: ____________________________________________________ Phone number:__________________________________
(Primary contact for data submission)
Please provide the following information. Instructions for completing the form are on page 2.
(1)
(2)
(3)
(4)
Death
NHAPIIA
IHS Linkage
Comments
Diagnosis
Clearance
Run
(Y/N, N/A)
Year
Conducted
(S/M/N)
(Yes/No)
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007

Attachment 7-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

(5)
File Name

(6)
NAACCR
Version

(7)
NAACCR
Record Type

Save As...

Instructions for Completing the 2009 NPCR-CSS Data Submission Form
NOTE: A Microsoft Word version of this form can be downloaded from the NPCR-CSS utilities Web site (https://www.npcrcss.org/utilities/)
and submitted upon completion via the document server along with your 2009 data submission.
(1)
(2)

(3)

(4)
(5)

Death Clearance Conducted: Enter “Yes” if death clearance was performed that year to the extent allowed by state law. Enter “No” if
it was not. If follow-up was initiated and information was not received, report the case as DCO.
NHAPIIA Run: Run the NAACCR Hispanic and Asian/Pacific Islander Identification Algorithm and record the derived NHIA and
NAPIIA variable. For details, refer to 2009 Submission Specification. Enter “S” if the SAS algorithm was run, “M” if done manually, or
“N” if not done.
IHS Linkage: Data linkage between your 1995–2006 incidence data and Indian Health Service files and IHS Link variable must be
coded and reported accordingly. Enter “Yes” for those years that linkage has been performed and “No” if not. Enter “N/A” if not
applicable (e.g., beyond reference year).
Comments: Use this space as needed.
File Name: Begin your filename with the two-character state postal code, a year range, and NAACCR layout version. For example:



1995 Georgia data, Version 11.1
= GA95V111
1995–2007 Georgia data, Version 11.1 = GA9506V111

(6) NAACCR Version: NAACCR Version 11 (including version 11.1, 11.2, 11.3).
(7) NAACCR Record Type: Should be “I,” Incidence (length = 1946) or “A,” Full Case Abstract (length = 6694), with the Patient
Confidential Section blanked out.

Attachment 7-2
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 8
2009 NPCR-CSS Data Items Not Transmitted
___________________________________________________________

Registry Name: ______________________ Person Completing Form: ____________________

If there are data items listed in the Attachment 2, Data Items by Diagnosis Year,
that are not transmitted, please check “Yes” below and write the NAACCR data
item name, NAACCR data item number, and a brief explanation for not
transmitting the data item(s). Otherwise, if all requested data items are transmitted,
please check “No” below.
Are there requested data items in Attachment 2, Data Items by Diagnosis Year, not
transmitted?
No _______
Yes ________

No

Data Item Not Transmitted Reason for Not Transmitting
(Name and [Number])

1
2
3
4
5
6
7
8
9
10
11
12

Attachment 8-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 9
2009 Duplicate Protocol Results
__________________________________________________________

Registry name: ________________________________________

Date: _______________

To complete this form, you must conduct the “NAACCR Protocol for the Identification of Duplicate
Cases” (Please refer to the 2009 NPCR-CSS Submission Specifications). The duplicate rates will be
used to adjust the completeness of case ascertainment estimates. The 1995–2006 duplicate rate will
be used to adjust the 1995–2006 estimates. The 2006 duplicate rate will be used to adjust the 2006
estimate. Please return this form with your data submission.

Diagnosis Year

Criteria

Results

1995–2006

1.
2.
3.
4.
5.

Number of duplicates found
Number of records examined
Duplicate rate per 1,000 records*
Number of records in incidence file
Duplicates corrected in file

1. ________________
2. ________________
3. ________________
4. ________________
5. Yes No N/A

2006

1.
2.
3.
4.
5.

Number of duplicates found
Number of records examined
Duplicate rate per 1,000 records*
Number of records in incidence file
Duplicates corrected in file

1. ________________
2. ________________
3. ________________
4. ________________
5. Yes No N/A

* [Number of duplicates found (1.) / Number of records examined (2.)] * 1,000 = Duplicate rate per
1,000 records.
N/A = not applicable
Comments:

Attachment 9-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 10
2009 NPCR-CSS Data Set
Participation Agreement
___________________________________________________________
2009 Data Submission
(For more information see the NPCR-CSS Data Release Policy.)

Registry name: _________________________________________________________________
Please indicate whether data from your registry, from diagnosis years 2006 and earlier, submitted in
January 2009 data submissions may be included in the following NPCR-CSS data sets:






Public-Use Data Sets*
 USCS expanded data set (WONDER)
 USCS county data set with age-adjusted rates only
 USCS county data set with age-adjusted and crude rates

____ Yes
____ Yes
____ Yes

____ No
____ No
____ No

Restricted-Access Data Sets*
 State level data set
 Regional level data set

____ Yes
____ Yes

____ No
____ No

Data release to state and national partners
t
 CBTRUS

____ Yes

____ No

* For a description of the data sets, see the 2009 NPCR-CSS Data Release Policy.
t See attached project descriptions and proposals.
This agreement will remain in place until a new agreement is signed. CDC will send a new
agreement form with each call for data.
Person completing form:
Name: ____________________________

Title: _______________________________

Phone: ____________________________

E-mail address: _______________________

Signature: _________________________

Date: _______________________________

Attachment 10
Page 1
November 2008
2009 NPCR-CSS Data Submission
Save As...

Save As...

Central Brain Tumor Registry of the United States (CBTRUS) Data Set
CDC will provide individual, record-level data (see below) for the list of variables to be included
in the data set for CBTRUS. CBTRUS will use these data to generate statistics for the print and
web versions of the statistical report titled Primary Brain Tumors in the United States Statistical
Report Supplement, 2004-2005; a previous version of the report is available at:
http://www.cbtrus.org/reports/reports.html. Age-adjusted rates and corresponding 95%
confidence intervals on brain and other central nervous system tumors will be presented by state,
histology, major histology grouping, primary site, behavior, gender, race, ethnicity, and age at
diagnosis. Only states that agree to participate and meet the USCS publication criteria will be
included in the data set. CBTRUS will sign data use agreements that the data are to be used the
statistical report only. For questions, contact CBTRUS staff at [email protected].

Name
Demographic Data Items

NAACCR Data Item

Patient ID Number
Address at Diagnosis—State

NHIA Derived Hispanic Origin
Sex

[20]
[80]
Derived based on [160],
[161] and [192]
[191]
[220]

NPCR Age Recode

Derived based upon [230]

NPCR Race Recode

Cancer Identification Data Items
Sequence Number—Central
NPCR Year of Diagnosis
NPCR Month of Diagnosis
Primary Site
Laterality
Grade
Diagnostic Confirmation
Type of Reporting Source
Histologic Type ICD-O-3
Behavior Code ICD-O-3

[380]
Derived based upon [390]
Derived based upon [390]
[400]; limit to C30.0,
C70.0–C72.9, C75.1–C75.3
[410]
[440]
[490]
[500]
[522]
[523]

Attachment 10
Page 2
November 2008
2009 NPCR-CSS Data Submission
Save As...

Notes

Same as race for USCS

Same as age at diagnosis
in SEER*Stat

Save As...

Attachment 11
2009 Registry Follow-Up Sources
_______________________________________________________________
Registry name:____________________________ Person completing form: _____________________

Instructions for completing the form are on the next page.
FollowUp
Year*
1995

Diagnosis Year
1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006
Source
Sites

1996

Source
Sites

1997

Source
Sites

1998

Source
Sites

1999

Source
Sites

2000

Source
Sites

2001

Source
Sites

2002

Source
Sites

2003

Source
Sites

2004

Source
Sites

2005

Source
Sites

2006

Source
Sites

2007

Source
Sites

2008

Source
Sites
Attachment 11-1
August 2008
NPCR-CSS 2009 Data Submission

Save As...

2007

Save As...

*Follow-Up Year, source of follow-up, and cancer sites followed up for vital status.
Do not complete shaded areas.
Under the heading of source, by each diagnosis year and follow-up year, enter the following:
P = Pre-NPCR reference year.
A = Conducts active follow up for purpose of determining vital status.
V = Linkage with state vital statistics records for purpose of updating vital status, including date and cause of
death.
N = Linkage with National Death Index for purpose of updating vital status, including date of death.
N+ = Linkage with National Death Index for purpose of updating vital status, including date and cause of death.
S = Linkage with Social Security Death Master File.
O = Other linkage sources used for purpose of updating vital status (please specify below).
- = No linkages performed.
Other linkage sources: ____________________________________________________
NOTE: If multiple sources were used, enter all appropriate acronyms in cell (e.g., V, N).

Under the heading of cancer sites:
- = Not applicable; linkages not performed.
AS = All sites.
S = Selected site (please specify: ____________________________________________________)

Attachment 11-2
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 12
Frequently Asked Questions About
the NPCR-CSS Data Submission
___________________________________________________________

1. What are the most frequent errors made when preparing data for submission?


Incorrect registry ID number: The registry ID number is the NAACCR registry ID
number (see NAACCR Vol. II).



Non-unique patient ID number: In order to run inter-record edits, patients must have
unique patient ID numbers assigned. Only patients with multiple primaries should have
the same patient ID, and the sequence number for each primary should be different. If
different patients have the same patient ID, the inter-record edits program will group
them together as the same patient and multiple edit errors will be triggered.



Confidential data: NPCR-CSS will not accept any confidential data. Submitting data
(columns 1947–6694) in the NAACCR Record Layout (v11, including versions 11.1,
11.2 and 11.3) will comply with NPCR requirements, but make sure that all confidential
data elements are excluded. In addition, there is a stand-alone program available on the
NPCR-CSS Web site that will extract only NPCR-CSS required data elements from the
NAACCR Record Layout (see Attachment 1 for details).

2. Can data submission forms be faxed?
We made all submission forms available electronically this year so that you can fill them out
on-line using your secure login to the CSS document server. However, if for some reason
you have to send your forms via other means, you may fax ((301) 961-8537) or mail the
forms to Macro International. If you fax the forms, please notify Macro International staff by
calling the NPCR-CSS Help Line at (301) 572-0502. If there are problems with the fax
transmissions, you will be notified.
3. How can I make corrections to my submission form?
Make corrections on the form on-line and submit your form again. You will receive a copy of
the revised form in PDF in your state folder on the CSS document server. Please make sure
you download a copy of the updated form for your own record. You should also notify
Macro International of any changes you made by sending an email to: [email protected].
4. Will I be notified when my transmission is received?

Attachment 12-1
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

As soon as your data are successfully uploaded to the NPCR-CSS Web site, you will receive
an automatic e-mail notification.
5. Is the NPCR-CSS user ID/password case sensitive?
No.
6. Should files be zipped prior to data submission and should each year be in a separate
file?
Zipped files can be transmitted in a significantly shorter period of time due to the
compression of file size, so we recommend that you zip your files prior to transmission.
Zipping files should allow you to send data from all years together; extremely large files may
need to be submitted by individual year (in zip).
7. Can I password-protect my zipped data submission file?
You do not need to password-protect your data files since they are transmitted through a
secured web server and are encrypted during transmission. If you password-protect your
files, please notify Macro International staff by calling the NPCR-CSS Help Line at (301)
572-0502.
8. What version of Microsoft Internet Explorer or Netscape must be used to upload my
data?
You will need Microsoft Internet Explorer 5.x or higher or Netscape 4.x or higher that allows
128-bit encryption. The software can be downloaded from the Microsoft Web site
(http://www.microsoft.com/windows/ie/downloads/recommended/128bit/default.asp).
9. What diagnosis years must be submitted for this submission?
Data from your NPCR reference year (not your registry reference year) through 2007 are
required to be submitted.
10. Should inter-record edits be run prior to submission?
To the extent possible, please clean up all edit errors including inter-record edit errors. Please
note that some of the IR-edits are now considered “coordinated core” edits and will be
assessed for standards. This is especially important if you want your registry’s data to be
considered for inclusion in the 2008 Restricted Access Dataset.
11. What should we do if we cannot submit a required field (e.g., census tract, county)?
Should these fields be left blank?
Please note that “County at Dx” is a coordinated core data element. If certain elements
cannot be submitted, please leave the fields blank (unless otherwise noted in Attachment 2).
Attachment 12-2
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

12. What if we cannot meet the submission deadline?
Every effort should be made to meet the submission deadline. If you know that you cannot,
please contact your CDC Program Consultant, who will in turn notify Macro International
staff.
13. When can we expect to receive the Data Evaluation Reports?
Reports will be available in early May 2009.
14. What if the wrong file is uploaded?
If you choose not to upload a file or want to stop an upload in progress, click on the Cancel
button at the bottom of the Document Upload screen. You will be returned to the File
Management screen where you can begin a new upload.
15. Can I delete a file after it has been uploaded?
When you upload a file, the file is automatically transferred from the document server to a
secure Macro International server. The user cannot delete a file once it has been uploaded. If
you want to have the file deleted, please notify Macro International by sending an email to
[email protected] or call NPCR-CSS Help Line at: 301-572-0502, with an instruction
to Macro International staff to delete the file. Macro International will confirm the deletion of
the file by e-mail.

Attachment 12-3
August 2008
NPCR-CSS 2009 Data Submission
Save As...

Save As...

Attachment 13
NPCR and IHS Record Linkage Procedures
___________________________________________________________
Note: The full protocol for the NPCR and Indian Health Services (IHS) record linkages is
available at the NPCR-CSS utilities page (https://www.npcrcss.org/docserver/) and includes the
confidentiality and security measures necessary in conducting the linkages. The following is an
abbreviated version of the protocol.
Participating registries with one or more Contract Health Service Delivery Area (CHSDA)
counties (Table 1) will be asked to capture a static copy of their master file—State File 1
(SF1)—based on the following selection criteria:
 All incident cases diagnosed during the time period 1995-2006,
 Reportable diagnoses (see #3 of 2009 NPCR-CSS submission specifications).
SF1 will contain sufficient patient-identifying information to allow records to be linked with an
administrative file from the IHS. This file should contain one record per primary cancer site/type
per individual, with one unique identifying number per individual and a sequence number to
uniquely identify each primary cancer. SF1 should follow the NAACCR confidential record
layout version 11.2; see Table 2 for specific data items.
SF1 PREPARATION PROCEDURES
1. Download the following two programs from the NPCR CSS Utilities page
(https://www.npcrcss.org/docserver/):
a) SAS Linkage Extraction Program (or the standalone IHS Linkage Extraction utility
program) and
b) GenEdits Plus software.
2. Install both programs.
3. Create an extract using the SAS Linkage Extraction program.
4. Run GenEdits Plus and the IHS linkage edit set against this extract. The GenEdits Plus
install will have a meta file/edit set specifically configured to help identify edit errors on
those fields used in the IHS linkage process.
5. Resolve any errors found in the edit report. All errors should only be resolved in the
Central Cancer Registry database.
6. Repeat steps 3-5 until all errors have been resolved.
7. Create a final extract to be used in the IHS Linkage.
8. Place final extract in an encrypted and password-protected format.
9. Deliver in one of the following 2 methods
 Electronically submit via a secure and encrypted site:
https://www.ihs.gov/NonMedicalPrograms/IHPES/EPI/CancerRegistry/index.cfm?
module=CancerRegistry&option=dataUpload
Attachment 13-1
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...



Ship according to a pre-arranged schedule via express courier service to:
IHS Division of Epidemiology
c/o Melissa Jim
5300 Homestead NE
Albuquerque, NM 87110

If the file is shipped, the password for SF1 will be sent separately to the IHS Division of
Epidemiology and Disease Prevention.
If a state is unable to send their data unaccompanied for administrative reasons, please
contact Melissa Jim (email: [email protected] ; phone: 505-248-4451) to make
individual arrangements.
IHS LINKAGE RESULTS
The results will be available in 2 different files:
 Match File 3 will contain, in a single record, the following information for the record with
the highest match score for each patient ID number in the pairs determined to be matches
between the SF1 and IHS File:
a) IHS record ID (for this project only)
b) Patient ID Number
c) Patient Sequence Number
d) Overall match score according to Link Plus
e) AI/AN race
f) IHSLink
g) The matching variables for the two records
1. First Name
2. Last Name
3. Middle Name
4. Gender
5. SSN
6. DOB
7. Date of Death
8. Diagnosis Address
9. Current Address (street, city, state, zip)
 Match File 4 will contain ALL records that were submitted for linkage in SF1. This file will
be in the NAACCR record layout version 11.2 shown in Table 2 with the IHSLink field
containing the updated value that will be submitted for the 2009 NPCR-CSS Call for Data.
It is recommended that Match File 4 be used to update IHSLink [NAACCR #192] prior to
submitting data to NPCR. All records that were not submitted to IHS for linkage should be
assigned a blank.
If Match File 3 is used to update IHSLink [NAACCR #192], please note that ALL sequences
for the patients identified in this match should be updated with IHSlink=1; otherwise, the
Attachment 13-2
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

interrecord edit for the IHS linkage (NPCR IR01) would result an edit error. All records included
in SF1 with a blank IHSLink field prior to the linkage and were not identified as matches should
be updated in the state registry with IHSLink=0. All records that were not submitted to IHS for
linkage should be assigned a blank for IHSLink.

Attachment 13-3
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

Table 1. States with one or more Contract Health Service Delivery Area (CHSDA)
counties1
































Alabama
Alaska
Arizona
California
Colorado
Florida
Idaho
Indiana
Kansas
Louisiana
Maine
Massachusetts
Michigan
Minnesota
Mississippi
Montana
Nebraska
Nevada
New York
North Carolina
North Dakota
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Texas
Washington
Wisconsin
Wyoming

1

Required to link registry data with the Indian Health Services (IHS) service data on an annual basis. All states will
conduct linkage every five years; the last linkage for all states was conducted in calendar year 2006. If a registry
does not have one or more CHSDA counties and finds the IHS linkage beneficial, then we will link their data if the
registry is able to send their data to IHS for linkage.

Attachment 13-4
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

Table 2. Record Layout for State File 1 (SF1)
NAACCR item #
10
20
40
50
70
80
90
100
160
161
162
163
164
190
220
230
240
192
380
390
1750
1760
1810
1820
1830
1840
2230
2240
2250
2280
2290
2320
2330
2335
2350
2355
2390

Columns
1-1
2-9
20-29
19-19
52-71
72-73
83-85
74-82
103-104
105-106
107-108
109-110
111-112
115-115
118-118
119-121
122-129
232-232
281-282
283-290
1294-1301
1302-1302
1307-1326
1327-1328
1329-1337
1338-1340
1947-1971
1972-1985
1986-1999
2006-2020
2036-2085
2099-2107
2108-2147
2148-2187
2188-2227
2228-2267
2021-2035

Name
Record Type
Patient ID Number
Registry ID
NAACCR Record Version
Addr at DX–City
Addr at DX–State
County at DX
Addr at DX–Postal Code
Race 1
Race 2
Race 3
Race 4
Race 5
Spanish/Hispanic Origin
Sex
Age at Diagnosis
Birth Date
IHSLink1
Sequence Number–Central
Date of Diagnosis
Date of Last Contact
Vital Status
Addr Current–City
Addr Current–State
Addr Curr–Postal Code
County–Current
Name–Last
Name–First
Name–Middle
Name–Alias2
Name–Spouse/Parent
Social Security Number
Addr at DX–No & Street
Addr at DX–Supplement
Addr Current–No & Street
Addr Current–Supplement
Name–Maiden2

1

Results from previous linkage should be included, if available. These previous results will
greatly facilitate the current linkage.
Attachment 13-5
August 2008
NPCR-CSS 2009 Data Submission

Save As...

Save As...

2

As available

Attachment 13-6
August 2008
NPCR-CSS 2009 Data Submission

Save As...