2014 Data CINA Data NAACCR Call for Data 2017.pdf · –NAACCR Items 3300, ... • CiNA Plus in...

Call for Data Instructional Webinar 9/21/2016

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Certification of 2014 Data Evaluation of 2015 Data

Submission Deadline 12/1/2016

Publication of CINA Data in 2017

NAACCR Call for DataInstructional Webinar

• Please submit all questions through the Q&A panel– When full screen place your cursor over the green tab at the top of your screen.

– Click on Q&A – Type your questions in the lower white box and submit to all panelist (not just host)

• We will address all questions after the last speaker• The recording, a copy of the slides, and the Q&A will be posted

to the NAACCR website next week

Questions


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• 2016 NAACCR Call for Data Overview– Glenn Copeland, Chair, CINA Editorial Subcommittee

• NAACCR Prep Utility– Andy Lake, IMS

• File and Electronic Form Submissions– Jim Hofferkamp, NAACCR Edits Metafile Administrator

• Data Assurance Agreement and Consent Forms– Recinda Sherman, NAACCR

• Questions

Agenda

Overview

General Instructions


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• Submissions due by midnight EST December 1, 2016

• Submissions will be accepted in Version 16• If you are unable to submit Version 16

• Contact Jim Hofferkamp

• [email protected]

• 217.698.0800 x 5

General Information

• Instructions and submission forms can be found at: http://www.naaccr.org/DataandPublications/CallforData.aspx

• Electronic forms can be submitted through the MyNAACCR website

• Forms requiring a signature should be emailed [email protected] or faxed [(217) 698-0188] to Jim Hofferkamp

General Instructions


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Help and Advice

For general questions • Jim Hofferkamp, CTR

• NAACCR, Inc.

• Phone: (217) 698-0800 ext 5

• Fax: (217) 698-0188


File Submission questions• Rick Firth

• Information Management Services, Inc. (IMS)

• 6110 Executive Blvd. Suite 310

• Rockville, MD 20852

• Phone: (301) 628-1282


Call for Data Only

• Submission in NAACCR Version 16– Opportunity to send as .xml

• Consolidated Process– Close Coordination with NPCR

• Revised Call for Data variable list

• New public use data set

2017 Call for Data Highlights


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• Submit one data file of all reportable incident cancer cases by December 1, 2016 for residents of your coverage area, who were diagnosed from 1995 through 2015. – The Definition of Requested Incidence Data for all uses and for a submission for Registry Certification only are available on the NAACCR website.

• See Call for Data Items on the Call for Data page

Step 1

• Data submitted must adhere to the NAACCR standard definitions and codes.

– All cases as defined in the document Data Selection Criteria Based on Case Reportability for each diagnostic year should be included on the file, regardless of whether they are reportable in only certain years.

– A table summarizing case reportability by year is available on the NAACCR website.

» See Data Selection Criteria on the Call for Data page

Step 1 (cont)


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• Submit data in NAACCR Record Layout, Version 16– If you are still using Version 15, convert using NPCR utility– http://www.cdc.gov/cancer/npcr/tools/registryplus/up_download.htm

– If you are unable to submit Version 16, contact Jim Hofferkamp.

• Refer to Standards for Cancer Registries Volume II, Standards for Cancer Registries Volume II, Version 16 for the record description.– Documentation of this file layout is on the NAACR Web site:

• http://www.naaccr.org/StandardsandRegistryOperations/VolumeII.aspx

Step 1 (cont)

• Perform the Duplicate Assessment Protocol on 2014 cases for Registry Certification and on 1995 through 2014 cases for CINA. – This protocol must be done if you want your data to be certified or included in any analysis requiring high quality data.

– Instructions for performing this step are available in the Duplicate Protocol on the Call for Data Web page

• Perform the Duplicate Assessment Protocol on 2015 cases

Step 2


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• If you are submitting for both CINA and Registry Certification, you must conduct the duplicate protocol multiple times: – Once, on the 1995‐2014cases

– Second time, on 2014 cases only

– Third time on 2015 cases only

• Note, if you are not submitting ALL years, 1995-2014, for CINA, perform the protocol on all the years that you are submitting.

IMPORTANT:

• U.S. registries should run the NAACCR Hispanic Identification Algorithm, (NHIA v2.2.3) and the NAACCR Asian Pacific Islander Identification Algorithm, (NAPIIA v1.2.2) on all cases submitted.

• Including Name fields in the file run through NAACCRprep will generate these codes this year, saving a processing step, with name fields dropped in the output file(s)..

Step 3


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• The two algorithms are combined into one SAS program, called NHAPIIA, for your convenience.– Instructions for applying these algorithms are available on the NAACCR website.

– In running the NHIA algorithm, we strongly recommend that registries choose option 1, which is now the program default. This option significantly reduces the likelihood of over‐predicting Hispanics.

– Please submit the NHIA/NAPIIA Verification Form. – If your registry software incorporates NHIA/NAPIIA, please specify the version on the Verification Form.

– Registry software generation should also follow NHIA option 1• Assigns values for unknown or “Surname only” cases in counties with <5% Hispanic population

NHIA/NAPIIA

• Run the edit set appropriate for your submission and the NAACCR format being submitted.

• If converting from V15, it is important to run (re-run) the edits AFTER conversion.

• Running edits on 2015 data is at your option

Step 4


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Step 4 (continued)

Type of Submission Type of Registry

Edit Set

Certification only All NAACCR Certification Edits

Certification & CINA/U.S.Submitting to NPCR

NPCR NPCR/NAACCR Core EditsNPCR Advanced Edits

Certification & CINA/U.S.Not Submitting to NPCR

SEER (non-NPCR)

NAACCR CINA Edits

Certification & CINA Canadian NAACCR CINA Edits-Canadian

• Run the Inter-record EDITS Utility.

– This application must be run after running the intra-record edits described above.

– Resolve all errors and report the number of errors that could not be resolved and remain on the submitted file (use the Inter-record EDITS Form).

Step 5


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• Run NAACCR Prep Utility– Calculates Survival Length

• Uses full diagnosis date and full date of last follow-up• Calculates a series of fields on survival status

– See NAACCR V16 items 1782-1788

– Generates NHIA/NAPIIA codes– Produces two output files for submission

– NPCR and NAACCR

Step 6

Changes for 2016


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Goal: Make Creation of Submission Files Easier• Past Submissions Required NAACCR Submission File to be Created From the NPCR Submission File

• Calculate Required Fields• Survival

• Rural Urban Continuum Codes (RUCA, RUC, and BEALE)

• Census Tract Poverty Indicators

Updates for 2016•Updates to Existing Calculations (Also Available in SAS)

• Survival Calculations•Census Tract Poverty Fields


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NEW for 2016•Create NPCR or NAACCR Submission File

•Calculate NHAPIIA Fields •NHIA•NAPIIA

NAACR File Types•Certification•CINA & Certification

NPCR Files• CSS• CSS & CER• CSS & CONCORD


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NHAPIIA Fields•Requires Name Fields for Input File

• Last Name• First Name• Maiden Name

•Names are NOT Written to output File •As with all calculated fields, the calculation can be turned off

Browse to Input File Location


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Choose Output File Location

Select Submission Type


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Create File!


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– For U.S. registries• Assigns Rural-Urban Continuum (Beal) codes

– Uses residence county – NAACCR Items 3300, 3310 or within 2220 for most

current BEAL code (2013) • Generates Census Tract Poverty Indicator

– NAACCR Item 110• Generates URIC and RUCA codes

– Specific Columns within NAACCR Item 2220

Step 6 (cont)

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– Empties User Selected Data Items

• Name fields

• Census tract, other NPCR specific items

• Residence county, exact day of diagnosis/last follow-up

Step 6 (cont)

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Version 16 Items• 94 County at DX Geocode1990• 95 County at DX Geocode2000• 96 County at DX Geocode2010

For NAHIA/NAPIIA• 2230 Name--Last• 2240 Name--First • 2390 Name—Maiden

New Data Items for this Years Call

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• 910 AJCC TNM Path Stage Group

• 970 AJCC TNM Clin Stage Group

Items Dropped

7. Create Your Data File.

8. Compress Your Data File

9. Transmit Your Data File

10.Electronic Submission Forms (available 10/1/16).

General Instructions for NAACCR Data File Submissions


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• A submission is only completed when the submit button is pressed.

• You may revise the forms after they have been submitted.

– If you make a revision after 12/1/2015, please contact Jim Hofferkamp, [email protected]

Step 10 (continued)

Steps 11 to 14

Data Assurances, Consent Forms

and Survival


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Review and sign the NAACCR Call for Data Assurance Agreements • NAACCR DAA• Send consents for active consent project you approve

• Public Use (2); ACS Facts and Figures, Medullary Thyroid Cancer Verification

• Send passive consents if you do NOT approve• CiNA Plus in SEER*Stat, NCI-Delay Adjustment, CiNA

Deluxe use by ACS• You can also send for documentation

• Fax or scan and email signed forms to Jim Hofferkamp at:

• fax number (217) 698-0188 • [email protected]

Step 11


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Checklist of materials requiring hard copy submission

• Data Assurances Agreement• Authorized signature on page 2

• 7 Consent documents• 4 for US and Canada

• 3 US Only

• Sign on each page starting page 9

Step 12

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• Assurances Agreement• Uses of Registry Data (Attachment A)

• Primary & Secondary

• Data Confidentiality Agreement (Attachment B)

• Researchers sign to gain access to CiNA data

• Active and Passive Consent Forms for Secondary Data Uses

• Public Use Dataset (Appendix A)

Data Assurances Agreement


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• NAACCR assures confidential handling of data• NAACCR will not release identifiable data

• Will use cell suppression for cells under 6 • unless specific, Active consent is provided

• Will not release use data for purposes other than in Attachment A without express consent

• CiNA Deluxe access requires RApR approval, IRB, individual registry consent, & written agreement (Attachment B)

• Access until research closes IRB (unless out of compliance)

• Public Use access (limited file) requires written agreement (Appendix A)

• Access for one year based on CiNA submission cycle

Data Assurances Agreement

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• NAACCR will notify registries in the unlikely event of unauthorized access or subpoena received

• Data remains property of submitting registry• Main CiNA datasets will be deleted after 5 years • Historic data will be maintained to support the on-going production of

reporting delay-factors• All CiNA files created for research will be deleted 1 year after IRB is

closed• NAACCR requests pre-submission copy of articles and reports

• Reviewed for scientific approach and to ensure confidentiality/IRB is protected

• Must be completed, signed, returnedEmail to [email protected] or

Fax to Jim Hofferkamp at 217 698-0188

Data Assurance Agreement (2)


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Primary• Produce CiNA Monographs

• Vol 4: Survival• counts, relative survival ratios and confidence intervals for the US, CA, NA • By sex and select cancer sites by total, stage and specific age groups for each

region. • For US, survival statistics by white and black race are also presented.

• Assess quality, fitness for use, and appropriate methodologic approach• Annual Report to the Nation, Comprehensive Cancer Control indicators• National/regional data requests for info, using cell suppression• Creation of CiNA Products

• CiNA+ Online (Quick Cancer Stats, Fast Stats) and CiNA+ in SAS• CiNA Deluxe- research file for members

• Public Use Dataset

Attachment A: Uses of Registry DataSection 1

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• Secondary• CiNA datasets released to researchers

• CiNA Deluxe, Survival, Breast Cancer Subtypes, Public Use

• Special studies

• On-going studies requiring annual approval are included in CFD

• Other studies are “consented” throughout the year

Attachment A: Uses of Registry DataSection 1 (2)


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• CiNA Deluxe: Requires RApR Approval, IRB, and Registry Consent• CiNA Survival: Requires RApR Approval, IRB, and Registry Consent

• Subset of CiNA Deluxe; includes special variables; annual update• CiNA Breast Cancer Subtypes (Imputed): Requires RApR Approval, IRB, and

Registry Consent• Subset of CiNA Deluxe; includes special variables, irregular update• Current 2011 dx date; up coming 2011-2014

• CiNA+ • Subset of most current 5 years of CiNA; limited variables; annual update• On-the fly analysis available on-line

• Accessible to all with the interwebs• Quick Cancer Stats and Fast Stats

• includes stage analysis available in CiNA 1-3; limited trends• SAS dataset

• Downloadable from interwebs• SEER*Stat

• Access requires Request Form and Researcher Confidentiality Agreement

CiNA Datasets Available for Analysis

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• CiNA Public Use (NEW)• Active Consent CFD• Subset of CiNA Deluxe; limited variables; annual update• Technical documentation, variable list, copy of DAA in Appendix A

• http://www.naaccr.org/LinkClick.aspx?fileticket=WfMYwvlVhPs%3d&tabid=161&mid=523• Limited dataset

• Two datasets• One allows a user to generate counts, rates and tends within the SEER*Stat system• One allows the user to export the data as a case-listing to allow regression and other analysis in

standard, statistical programs• Extensive recoding for standard analysis

• Age, race, ethnicity, central seq, behavior, primary site (SEER), ICCC, CBTRUS, histology (SEER), stage• County-level ABSM, ability to applyinternational MP rules

• Access requires Data Assurances Agreement• 10 assurances; similar to SEER*Stat agreement• No attempt to identify, link, release, share password, or use for non-Public Health purposes• Caution when interpreting <20 cases, no report of <6, proper citation• <6 cell suppression on main variables (age, race, etc—but can have <6 in a cell if tables include rare site or

histology)

• Upcoming…CiNA Geographic• Tract-level data, evaluation of ABSM, potential release to researchers

CiNA Datasets Available for Analysis (2)


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• Section 2- Physical and Electronic Security

• Section 3- Secondary Uses Consents in CFD

• Section 4- Assurances of Proper Use

• Section 5- Consenting (Active & Passive)• Rescinding Consent

Attachment A:

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• Passive• No linkages• North America, US, Canada, or Regional data analysis• Standard dataset• Standard+ABSM (area-based social measures)

• No county identifiers

• Active• Linkages • Individual state, province, or county analysis• Single age, County, ABSM+County, special variables

Registry Consent Categories


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• CiNA Public Use Dataset—Case Listing (Exporting from SEER*Stat Allowed)—Active Consent

• CiNA Public Use Dataset—Case Listing (Exporting from SEER*Stat NOT Allowed)—Active Consent

• ACS Facts and Figures [US Only] – Active Consent • Medullary Thyroid Cancer Verification- Active Consent• CiNA Plus in SEER*Stat – Passive Consent• NCI Delay Adjustment – Passive Consent • CiNA Deluxe File for use by ACS for routine inquiries – Passive

Consent • Publication of registry-specific and aggregated relative survival

estimates in Cancer in North America – Passive Consent • moved to Primary Use for CiNA Monograph; no consent

2017 CFD Consents

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• For Information/Documentation only• Do not sign or return

• Treat as private and nonpublic • Restricted use– no administrative legal use• Release only aggregate data – cell suppression <6• No linkage to secondary data• Data remain property of NAACCR• Immediately report any unauthorized access/subpoena• NAACCR reviews articles/reports prior to submission

• Scientific review and adherence to confidentiality/IRB

Attachment B:Data Confidentiality Agreement for Researchers


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• Review and update the Registry Research Information Database for your registry.

• electronic form on the NAACCR call for data Website that will allow you to review and update information on your registry.

Step 13

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• Virtual Pooled Registry Cancer Linkage System (VPR-CLS) dataset

• After all other CFD requirements, pull dataset for VPR-CLS

• Once 2015 cases are ready for submission (Dec 1 – Jan 31)

• This file will be used for any subsequent linkages for 2017

• Your registry may choose to conduct linkages on a case-by-case basis.

• Specific instructions are included

Step 14


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1. 7 survival time variables

2. Vital Status Follow-Up Activities Form

3. Included in Primary Data Use

NAACCR Call for Data and Survival

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• With the aim of obtaining the most precise estimates of survival, it is necessary to use complete dates (month, day, and year components) in the calculation of the survival interval.

• The cancer registry community has collaborated on a survival algorithm that uses day information in the survival calculations.

• SEER*Stat now calculates survival using monthly intervals based on complete dates.

7 Survival Time Variables


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• Item 1782 - SURV- DATE ACTIVE FOLLOWUP

• Item 1783 - SURV- FLAG ACTIVE FOLLOWUP

• Item 1784 - SURV- MOS ACTIVE FOLLOWUP

• Item 1785 - SURV- DATE PRESUMED ALIVE

• Item 1786 - SURV- FLAG PRESUMED ALIVE

• Item 1787 - SURV-MOS PRESUMED ALIVE

• Item 1788 - SURV- DATE DX RECODE

These items were implemented in NAACCR V15.


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Either1. Provide full date of diagnosis and date of last contact to NAACCR

Or

2. If you can’t provide full dates to NAACCR, then calculate the 7 survival time variables and then strip the date components you can’t send:

1. Presumably, strip Day component only

2. Do not strip the year components of dates

What You Need to Do:


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• Registries will have the option of using a SAS program, SEER*Edits, or NAACCRprep to calculate these variables.

• In addition, your central registry software vendor may include the algorithm in your call for data programs. Please contact them directly to inquire about this.

• Additional information about the algorithm and what specific values are assigned in given missing date situations is available here: http://seer.cancer.gov/survivaltime/.


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• We encourage all NAACCR registries to run NAACCRPrep.

• If possible, please also submit to NAACCR in your call for data file the complete dates of birth, diagnosis, and last contact/death.

• NAACCRPrep:

• Input: complete dates of diagnosis and last contact

• Sorted by Patient ID and Sequence Number Central

• Output: 7 Survival Time Variables

• Thanks to IMS, it will be…

NAACCRprep Utility and Survival Variables


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• For US registries, please note that 2014 deaths are available for linkage via the NDI.

• If you can, please link with NDI prior to data submission.

• The 2015 NDI Early Release File is available for both NDI Routine searches and NDI Plus searches.

NAACCR Call for Data and Survival


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• Registries interested in creating their own databases for survival analysis in SEER*Stat should contact Steve Scoppa ([email protected]) for information on sorting their file before using SEER*Prep.

• Registries interested in performing survival analysis may wish to request access to the CiNA Deluxe survival dataset.

• This will ensure that your methods and results will match those used in CINA Survival and you will have access to national and NAACCR results for comparison.

Interested in Calculating Survival?


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Edits

• Based on v16 metafile– A v15 file must be converted prior to running the edits

• Call for Data metafile will be posted on 10/1/16– Currently being tested

Edits


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• ICD Revision Number, Cause of Death (SEER IF37)/ ICD Revision Number, Cause of Death (NAACCR)– Tables updated in v15a (last years edits based on v15)

– Edit may find incorrect cause of death codes that were not identified last year.

Testing Results

CINA Editorial WGThank you for your hard work!

Glenn CopelandMichigan Cancer Surveillance Program

Brad WohlerFlorida Cancer Data System

Prithwish DeOntario Cancer Registry

Cancer Care Ontario

Wu XiaochengLouisiana Tumor Registry

LSUHSC School of Public Health

Maria SchymuraNew York State Cancer Registry

Andy Lake and Rick FirthInformation Management Services, Inc

C


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Thank You! Jim Hofferkamp, CTR

[email protected]

Thank You!

2014 Data CINA Data NAACCR Call for Data 2017.pdf · –NAACCR Items 3300, ... • CiNA Plus in...

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