Registry Plus Updates and Portability Initiative

1
Registry Plus Updates and Portability Initiative

• Joseph D. Rogers
• National Program of Cancer Registries (NPCR)
• 2005 National Cancer Prevention and Control
  Meeting
• NPCR Program Directors
• May 2-5, 2005
• Atlanta, Georgia

2
DAST Mission Statement Goals and Objectives

• 1. Provide statistical and analytical support to
  the Division of Cancer Prevention and Control
  (DCPC)

3
DAST Mission Statement Goals and Objectives

• 2. Design, develop, distribute, and support
  cancer registry tools
• Registry Plus Modules
• Registry Plus Online Help
• EDITS
• NAACCR format conversion utilities
• Programs to support Collaborative Staging

4
DAST Mission Statement Goals and Objectives

• 3. Provide technical support to central cancer
  registries on data processing issues
• 4. Provide support in the collection,
  evaluation, and release of data for the National
  Program of Cancer Registries--Cancer Surveillance
  System
• 5. Informatics/MERP Promote the electronic
  reporting of cancer surveillance data to central
  registries by developing a national electronic
  reporting plan (model)

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Presentation Outline

• Registry Plus Products
• Brief Description
• Features Current Status
• Plans
• Utilities
• EDITS
• NPCR and MACRO Websites
• SAS and SUDAAN Availability
• Portability
• Contact Information

6
Current Registry Plus Products

• Abstract Plus
• Prep Plus
• CRS Plus
• TLC Plus
• Registry Plus Online Help
• Link Plus
• Web Plus -- new

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Registry Plus Advantages

• Products are distributed free of charge
• CDC/NPCR provides technical support to NPCR
  states and territories
• Products are designed to be customized to meet
  the needs of state specific requirements, but
  CDC/NPC does not provide extensive local
  customizations
• CDC/NPCR responds to user requests for
  enhancements through the Registry Plus Users
  Group (RPUG) that are
• Generally useful
• Within NPCRs mission
• The RPUG meets monthly and then annually at
  NAACCR
• Products comply with changing national standards

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Abstract Plus Brief Description

• Abstract Plus was written as an abstracting tool
  for cancer registries, in support of CDC's
  National Program of Cancer Registries
• Used to summarize the medical record into an
  electronic report of cancer diagnosis and
  treatment by abstractors and other individuals or
  groups who work with cancer data
• All data items in national standard data sets,
  including text, are supported
• The primary users are hospitals and laboratories
• CDC provides support and consultation to states
  installing the Registry Plus software
  applications and doing basic state-specific
  customization

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Abstract Plus Features Current Status

• Data sets can be customized to meet local needs
  including locally-defined variables
• The output of Abstract Plus is an electronic
  abstract in the record format of the North
  American Association of Central Cancer Registries
  (NAACCR) data exchange layout (currently NAACCR
  version 10.1)
• The NAACCR edits are tightly integrated into
  Abstract Plus -- allowing standard editing and
  error correction online
• Abstract Plus includes Registry Plus Online Help,
  a collection of standard coding manuals that are
  cross-referenced, indexed, and context-linked to
  minimize the need for reference to printed
  manuals during abstracting

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Abstract Plus Features Current Status, cont.

• Abstract Plus can be distributed free of charge
  to cancer reporting facilities in a state
• Although the product is not designed to include
  all functionality needed in an approved hospital
  cancer registry, it is suitable for reporting
  from non-registry hospitals, clinics,
  laboratories, and other sources for cancer
  incident reports (does not compete with hospital
  registry software)
• Abstract Plus can also be configured for special
  purpose data collection

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Abstract Plus Plans

• Currently Abstract Plus is widely distributed and
  in use for NAACCR record layout version 10.1
• Version 2.00.00 -- targeted release for May 2005
  
• Access 2000 compatible
• Has improved menus
• Screen options expanded and improved
• Allows for the creation of configurations, which
  pair a display type and edit set
• Configuration remains active until another is
  selected
• Directory selection for database, backup and
  restore

12
Abstract Plus Plans, cont.

• Multilanguage capability Spanish French
• Ability to create sections, used to group display
  fields
• Exporting options are expanded
• Print options are expanded
• Keyboard navigation are expanded
• Includes site-specific Collaborative Staging (CS)
  and surgery code lookups
• Automatically upgrades via the internet
• All Registry Plus products will undergo a
  professional usability evaluation that will focus
  on overall product interface standardization and
  usability enhancements

13
Prep Plus Brief Description

• Used for receiving and editing batches of
  abstracts in a standard NAACCR format into a
  central registry
• Accepts abstracts created by any software system
  (most all NAACCR versions in use)
• Registers, batches, and creates entries in the
  Registry Plus tracking system for monitoring
  workflow
• Edits abstracts and presents cases individually
  for correction -- visual editing of cases
• Produces edit reports for transmission back to
  the facility submitting the data
• Provides multi-user capacity
• Provides user-defined functions for local
  processing options

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Prep Plus Features Current Status

• Improved user access to tracking features
• Expanded reporting capabilities
• Additional user defined functions
• Updated to support NAACCR version 10.1 record
  layout
• Incorporated Collaborative Staging calculation
• Added capability to mark a bundle of abstracts as
  non-sharable for inter-state exchange

15
Prep Plus Plans

• Update to NAACCR 11 standards
• Add functionality to query tracking database and
  link it to CRS Plus
• Add functionality to notify facilities of errors
  in the submitted bundles, view error reports on
  the web, and submit corrections online
• All Registry Plus products will undergo a
  professional usability evaluation that will focus
  on overall product interface standardization and
  usability enhancements

16
CRS (Central Registry System) Plus Brief
Description

• Creates and maintains a linked and consolidated
  database of patients, tumors, and facility
  records
• This is the main central registry database
  program in the Registry Plus suite
• Client/Server application
• Runs over Access or a SQL Server databases
• Links incoming abstracts against the existing
  database, with softwareassisted consolidation
  into patient, cancer, and facility tables (Tumor
  Linkage and Consolidation Plus or TLC Plus)
• Allows side-by-side displays and automated
  comparison of incoming and stored data
• Updates the tracking system with processing
  milestones for each abstract

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CRS (Central Registry System) Plus Brief
Description, cont.

• Provides management reports and the ability to
  export records in the NAACCR record format
• Facilitates user-selected views of data
• Provides adjustable match weights for linkage
• Produces extracts to meet call-for-data
  requirements of NPCR and NAACCR
• Exports selected records in NAACCR format

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CRS Plus Features Current Status

• Support for automated Tumor Linkage and
  Consolidation (TLC Plus)
• Substantial technical support for new and
  existing installations
• Enhancements to the user interface, to improve
  functionality, acceptance, and maintainability
• Update the tracking system with processing
  milestones for each abstract
• Updated to support NAACCR version 10.1 record
  layout
• Incorporated Collaborative Staging calculation
• Updated standard extracts for the latest data
  submissions standards
• Added functionality to show updates history of
  cases

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CRS Plus Plans

• Update to NAACCR 11 standards
• Add more management reports
• Process records from secondary sources
• Implement automated central sequence number logic
• All Registry Plus products will undergo a
  professional usability evaluation that will focus
  on overall product interface standardization and
  usability enhancements

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Automated Tumor Linkage and Consolidation Plus
Brief Description

• The add-on to CRS Plus
• Automate multiple primary determination and
  consolidation of data items from abstracts
• Tumor linkage rules are site-specific and table
  driven
• Consolidation rules are a sequence of directives
  to compute consolidated value for data items,
  rules are written in a table and modifiable by
  states
• Implemented as a dynamic link library callable
  from CRS Plus

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TLC Plus Features and Current Status

• Thus far, linkage rules for prostate have been
  developed
• Consolidation directives are available to write
  rules for consolidating data items
• In production with CRS Plus

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TLC Plus Plans

• Add tumor linkage rules for additional sites
• All Registry Plus products will undergo a
  professional usability evaluation that will focus
  on overall product interface standardization and
  usability enhancements

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Registry Plus Online Help Brief Description

• Registry Plus Online Help (RPOH) is an integrated
  user-friendly online help system for Windows --
  incorporating standard abstracting and coding
  documents from cancer registry standard setters
• SEER manuals, Collaborative Staging
  documentation, the ACoS Commission on Cancer
  FORDS Manual, the NAACCR data dictionary, and
  ICD-O-3
• All manuals hyper-linked and cross-indexed
• Stand alone or be integrated as context-sensitive
  help into other applications
• Convenient substitute for bulky paper manuals
• Embedded in Registry Plus applications, but is
  also available as a free-standing program from
  the Registry Plus web site

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Registry Plus Online Help Features Current
Status

• Designed to automatically upgrade older
  application versions while preserving
  configuration settings
• Adopted by major software vendors as an add-on to
  their products
• Improved collection of standard coding manuals,
  cross-referenced, indexed, and context-linked to
  minimize the need for reference to printed
  manuals during abstracting
• Improved overall usability of the current online
  help system

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Registry Plus Online Help Plans

• NAACCR Version 11 documentation will be
  incorporated
• The SEER manual from 2004 will be incorporated
• Other documents, such as the NAACCR EDITS
  Metafile documentation, are being considered for
  inclusion

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Link Plus Brief Description

• Link Plus was written as a linkage tool for
  cancer registries
• Stand-alone Windows application for
  probabilistic record linkages
• Incorporates scientifically valid algorithms in
  a user-friendly package for both the novice and
  the expert
• Can be used to link a cancer registry files to
  external files, or to detect duplicates in the
  cancer registry database
• Accepts data files in four formats
• CRS Plus database, the NAACCR record layout,
  delimited files, or fixed-width files
• There are no theoretical or practical barriers
  existing to prevent you from using Link Plus with
  other datasets (not limited to cancer registry
  data)

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Link Plus Brief Description, cont.

• Computes probabilistic record linkage scores
  based on the theoretical frame work developed by
  Fellegi and Sunter
• Can handle missing values of matching variables
• Facilitates a simple and efficient blocking
• Generates match and non-match reports that are
  tab delimited text files that can be imported
  into Excel for review
• Provides the multiple comparison methods

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Link Plus Features Current Status

• Updated to support NAACCR version 10.1 record
  layout
• Expanded the list of default variables for NAACCR
  record layout
• Provided functionalities to perform clerical
  review
• Allows creating a merged file from two linked
  data files
• Permits creating a file including records from
  secondary sources
• Now has an option to run in batch mode
• Designed to automatically upgrade older
  application versions while preserving
  configuration settings

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Link Plus Plans

• Add address comparator
• Add edit distance functions such as Levenshtein
  distance to measure the similarity between two
  strings
• Export secondary sources records
• All Registry Plus products will undergo a
  professional usability evaluation that will focus
  on overall product interface standardization and
  usability enhancements

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Web Plus Brief Description

• Brand new Registry Plus module it is a web-based
  application used to collect cancer data securely
  over the public Internet
• Suited for physicians offices and other
  low-volume reporting sources that do not have
  facility-based cancer registries
• Records are saved in a database at the hosting
  central registry and cases entered by one
  facility or office are not visible to other
  facilities
• Data entered are validated by the CDC EDITS
  Engine running on a web server
• Users, display types, and edit configurations are
  managed at the hosting central registry
• Communication between the client and the server
  is encrypted with Secure Socket Layer (SSL)
  technology

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Web Plus Features Current Status

• Currently being pilot tested
• Web Plus is currently hosted for review at
  http//broadband.ngcits.com/webplus/logonen.aspx
• To access Web Plus, logon to the server using a
  user name and password of demo. Then log on to
  the application by choosing St. Simon Hospital,
  John Doe as the user, and abstractor as the
  password

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Web Plus Plans

• Will be available for download from the Registry
  Plus web site by September 2005
• Reports will be added to make it advantageous for
  physicians and other facilities to use the
  application for cancer reporting
• Runs over Microsoft Internet Information Services
  (IIS) and stores the data in a Microsoft SQL
  Server database with plans to include other
  database servers
• All Registry Plus products will undergo a
  professional usability evaluation that will focus
  on overall product interface standardization and
  usability enhancements

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NAACCR Conversion Utility, 6-7-8-9-10 NORTHCON
10

• Northcon utility program converts a file of
  NAACCR records in versions 6-9 to a higher
  version
• Available as DLL and as a free-standing program
• Status Northcon 10 version currently released
  and in use

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EDITS Brief Description

• Began more than 10 years ago as a CDC project
  with collaboration from national standard-setting
  organizations
• Prominent software developers in the cancer
  registry community were contracted to design and
  write parts of the system, with the main
  programming work being done by CDC staff
• There are four components to the EDITS software
• EditWriter
• This is a standalone application that establishes
  a standard working environment in which users can
  create data checking computer code

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EDITS Brief Description, cont.

• EDITS Metafile
• Specialized database that includes all the code
  snippets, tables, constants, and definitions that
  are needed to check files and records of cancer
  data
• Edit Engine
• Library of computer functions that can give any
  application program access to the resources
  contained in the Metafile
• GenEDITS and GenEDITS Lite
• Generic driver program, incorporating the Edit
  Engine. It reads cancer data and tests it using
  the specifications in the Metafile. The Lite
  version is a simplified Windows version of
  GenEDITS for small tasks

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EDITS Current Status and Plans

• EDITS has become an important part of the cancer
  surveillance infrastructure, but it comprises
  quite old (MS-DOS) programs that have become
  inconvenient for users who are accustomed to a
  familiar graphical environment for computing
• EDITS modules are being modernized as they are
  converted to the Windows operating environment
• New versions of the Metafile, EditWriter, the
  Edit Engine, and GenEDITS will be released later
  this year

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NPCR and MACRO Websites

• The Registry Plus and EDITS websites can be found
  under the NPCR web page www.cdc.gov/cancer/npcr/
• General information on each product
• Fact sheets and system requirements pages are
  included
• Version information and change logs are included
• Where the must current production installation
  downloads can be found
• Check back often to get new version information
  and updates to the Registry Plus and EDITS suites
  of tools

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NPCR and MACRO Websites, cont.

• Submission specific tools can be found on the
  NPCR document server
• The NPCR document server utilities page can be
  found by going to the following URL
  www.npcrcss.org and the selecting the NPCR-CSS
  Utilities Page link
• Submission specific installations of software can
  be found there
• GenEdits Lite
• NPCR Inter-Record Edits Utility
• The Data Extraction Utility
• The SEER Site Recode DLL

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NPCR Related Issues

• SAS and SUDAAN are now available for distribution
  to CDC grantees on a limited basis
• DHHS has negotiated a SAS SUDAAN Enterprise
  License for all of DHHS
• Under the terms of this license, CDC programs may
  provide a broad range of SAS and SUDAAN products
  to recipients of the Grants and Cooperative
  Agreements

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Portability Guidance and Requirements

• The NPCR must assure that its available funds for
  local application development are spent as
  effectively as possible in order to maximize
  their usefulness to national cancer surveillance
• Avoid duplication of application development
  activities and pool existing resources
• NPCR will be conducting an inventory of cancer
  registry software to help Program Directors and
  Project Officers facilitate work toward this goal
• Software applications developed with NPCR funds
  should
• meet a genuine need that cannot be met by
  existing systems
• foster adherence to North American Association of
  Central Cancer Registries (NAACCR) standards
  where applicable
• be customizable and configurable by other
  registries, easily and without programming

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Portability Guidance and Requirements, cont.

• be modular, complete in itself, severable from
  particular environments, and scalable
• be interoperable communicates with programs
  (callable)
• be well documented for users and installers
• be proposed after alternatives to new programming
  have been evaluated
• meet a need that is central to NPCR goals
• be open-source or free for other registries to
  use, avoiding any requirement for the use of
  expensive proprietary tools or components
• use widely-known operating systems
• have a stated plan for portability, e.g.,
  collaboration with other states for testing and
  porting
• use freely distributable components

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Contact Information

• For questions or concerns about portability,
  please see Michael Lanzilotta or myself during
  the conference
• Questions about NPCR Registry Plus or EDITS,
  please stop by our table in the display area
• For any other questions, comments, or suggests,
  you can
• Visit our NPCR website www.cdc.gov/cancer/npcr/
• E-mail or call
• jrogers_at_cdc.gov
• 770-488-4701