Pacific Cancer Programs

Pacific Regional Central Cancer Registry (PRCCR)

In response to the lack of systematic and accurate collection of cancer data in the region, the US Affiliated Pacific Island (USAPI) Pacific Regional Cancer Registry was conceived and initiated through the Cancer Council of the Pacific Islands (CCPI) in 2003.

The primary tasks and responsibilities of the Pacific Regional Cancer Registry are:

  • To develop the systems and policies which insure proper identification, reporting and recording of all cancers in each USAPI
  • To develop the capacity and infrastructure for each of the USAPI to manage the rigorous data collection and entry required of a cancer registry
  • To develop a cancer registry where the data is controlled and owned by each individual
  • Jurisdiction and to ensure the data are useful for local program planning and evaluation as well as Tracking local cancer trends over time.
  • To develop a cancer registry system that is sophisticated, flexible and sustainable, i.e. takes into account the relative case load of cancers in each USAPI, the availability of trained
  • personnel, and the local ability to finance such a system
  • To link the individual USAPI cancer registries in a synergistic system which allows for economies of scale to make the regional registry project sustainable

The University of Hawaii, Department of Family Medicine and Community Health was designated the bonafide agent on behalf of the ten USAPI jurisdictions to plan and implement the Centers for Disease Control (CDC) National Program of Cancer Registries (NPCR) planning program. The CDC cooperative agreement was awarded in July 2007. The majority of USAPI jurisdictions began reporting 2007 data to the CDC NPCR in December 2009 via the Pacific Regional Central Cancer Registry. The Cancer Council of the Pacific Islands, as the Advisory Board to the PRCCR, has included data items within the cancer registry database to capture selected variables on Non Communicable Diseases (NCDs). By so doing the regional registry system is able to identify cancer patients with co‐existing NCDs as well as interface with the public health programs. This ensures that the NCD needs are properly identified and incorporated into care plans and that individuals with cancer and other NCD co-morbidities are included in all NCD and cancer “registries” or databases.

Partners:
Hawaii Tumor Registry
1356 Lusitana Street
Honolulu, HI
(808) 586-9750

Conferences, Meetings and Trainings

2011

Cancer Registry Basics

  • Cancer Registry FAQ Sheet - (pdf 40 KB)
  • Pohnpei QA for Cancer Registry Completeness - (pdf 200 KB)

Cancer Registry Acts

Below are the current cancer registry acts for the United States as well as the US Affiliated Pacific Islands (USAPI).

  • American Samoa's Cancer Registry Act - (pdf 40 KB)
  • Commonwealth of the Northern Marianas Island's Cancer Registry Act - (pdf 2.97 MB)
  • Federated States of Micronesia's Cancer Registry Act - (pdf 31 KB)
  • Guam's Cancer Registry Act - (pdf 180 KB)
  • Guam’s – Cancer Regulations, Law & Amendment - (pdf 910 KB)
  • Palau Cancer Registry Act - (pdf 20 KB)
  • Republic of the Marshall Islands Cancer Registry Act - (pdf 2.8 MB)
  • The US Cancer Registry Amendment Act - (pdf 30 KB)

Training Materials and Recourses for Cancer Registrars

Centers of Disease Control (CDC) Site Readings:

Literature on Specific Types of Cancer:

Fundamentals of Registry Operations

The "Fundamentals of Registry Operations" educational series includes eight training sessions developed by the North American Association of Central Cancer Registries for the National Program of Cancer Registries (NPCR). These materials address various cancer registry functions and the necessary procedures for each. This series is an excellent training resource for new employees and provides reference materials for the experienced professional in either the central or hospital registry. The training includes general and specific information on each subject, tutorials, and a comprehensive test.

  • Session 1: Case Ascertainment - (zip 11 MB)
  • Session 2: Principles of Abstracting - (zip 11.5 MB)
  • Session 3: Data Editing and EDITS - (zip 13 MB)
  • Session 4: Coding and Visual Editing - (zip 11 MB)
  • Session 5: Follow-up: Active and Passive - (zip 12 MB)
  • Session 6: Audits: Casefinding and Reabstracting - (zip 15 MB)
  • Session 7: Data Collection and Coding: Race and Ethnicity - (zip 15 MB)
  • Session 8: Basic Cancer Epidemiology and Biostatistics - (zip 14 MB)

SEER Self Instructional Manuals For Tumor Registrars

  • Book 1 - Objectives and Functions of a Tumor Registry (1999) - Describes the functions, objectives, activities required to run a tumor registry, and the various portions of a registry (e.g. describes the various record systems required to run a registry accession file, case file, follow-up cards). - (pdf 8.9 MB)
  • Book 2 - Cancer Characteristics and Selection of Cases (1991) - Provides instruction in the terminology associated with cancer. Includes a brief description of the natural history of the major cancer types. Introduces the use of ICD-O. - (pdf 2.1 MB)
  • Book 3 - Tumor Registrar Vocabulary: The Composition of Medical Terms (1992) - Medical terminology. - (pdf 3.3 MB)
  • Book 4 - Human Anatomy as Related to Tumor Formation (1995) - Introduction to human anatomy and neoplasm(s) associated with each body system. - (pdf 12 MB)
  • Book 5 - Abstracting Medical Record: Patient Identification, History, and Examinations (1993) - Describes the medical record, how to locate and record the information related to a cancer registry (abstract case information).- (pdf 6.1 MB)
  • Book 6 - Out of print, substitute: Summary Staging Guide (1977) - (pdf 2.7 MB)
  • SEER Summary Staging Manual - 2000
  • Book 7 - Statistics and Epidemiology for Cancer Registries (1994) - Introduces the tumor registrar to the statistics required to run a registry: includes discussion of incidence, mortality, and survival. - (pdf 10.9 MB)

NPCR Prep Plus & CRS Plus Power Point, Software Programs for Registering, Editing, Linking, Consolidating, and Maintaining Central Cancer Registry Data

USAPI Cancer Registrar Training, Honolulu, Hawaii - Training Materials from Linda Rego with the Hawaii Tumor Registry - March 2009

Beginner Cancer Registrars Information:

Electronic Manuals, Guides & Standards for Cancer Registrars

  • Facility Oncology Registry Data Standards (FORDS) 2010
  • Multiple Primary and Histology Coding Rules Manual
  • SEER Summary Staging Guide: Cancer Surveillance Epidemiology and End Results Reporting
  • Missouri Cancer Registry Web Plus User's Manual
  • Abstract Plus Administrator Training Manual
  • NAACCR Standards for Cancer Registries Volume II, Data Standards and Data Dictionary
  • Collaborative Stage Data Collection System Version 2, Implementation Guide for Registries and Vendors

SEER Program Coding and Staging Manual 2010

The 2010 manual is to be used for cases diagnosed January 1, 2010 and forward.

  • SEER Program Coding and Staging Manual 2010 (pdf 880 KB)
  • Note: The PDF includes the main body of the 2010 manual. Appendices A through D will be posted at a later date.

Collaborative Stage Data Collection System Coding Instructions

Part II: Site Specific Schemas, TNM 7 Schema List

Policy and Procedure Manuals

  • Palau Cancer Registry Policy and Procedure Manual - (pdf 310 KB)

Data Submission and Confidentiality

The National Program of Cancer Registries Cancer Surveillance System 308(d) Assurance of Confidentiality Statement describes the format and content of data that the National Program of Cancer Registries’ Cancer Surveillance System (NPCR-CSS) will release or share. This multi-year policy updates the December 2007 NPCR-CSS Data Release Policy. This policy applies to data submitted to the Centers for Disease Control and Prevention (CDC) for the 2009 data submission and for all future data submissions until a new policy is provided. The NPCR-CSS Privacy Steward (Mr. Joseph Rogers) will clear all releases of state data, ensuring that the data are released according to the terms of the NPCR-CSS Data Release Policy. It is possible that, in future years, data release practices or the content and format of released data may vary from those described in these guidelines. Such changes may occur as a result of improvements in the quality of the data, changes in information technology, and evolving data needs. However, if such variations occur, they will provide comparable protection (or more protection) for patient confidentiality than is described in this policy. If it is anticipated that any data will be released with less protection (as determined by the NPCR-CSS Privacy Steward) for patient confidentiality than is described in this policy, NPCR central registries will be notified and will have ample time to respond before the data are released. This policy will be reviewed annually by the NPCR-CSS Privacy Steward and other appropriate CDC staff members to determine whether revisions are needed. If revisions are needed, NPCR central registries will be notified and allowed to review and comment on the revisions before they become final.

  • National Program of Cancer Registries Cancer Surveillance System 308(d) Assurance of Confidentiality Statement - (pdf 145 KB)

Cancer Registry Websites

Web Plus, CRS Plus & PREP Plus:

  • CRS Plus Prep Plus System Requirements - (pdf 20 KB)
  • PRCCR Exporting Completed Cases in Abstract Plus and Uploading Via Web Plus Instructions - (pdf 1.08 MB)
  • Web Plus Security Features and Recommendations - (pdf 80 KB)
  • Web Plus System Requirements - (pdf 65 KB)

Conference, Meeting & Training Materials

National Program of Cancer Registries Program Directors Meeting Presentations - April 2009

Advisory Committees:

  • Advisory Committee To the Texas Cancer Registry - (pdf 2.1 MB)
  • Delaware Cancer Registry Advisory Committee - (pdf 2.7 MB)

Collaboration:

  • Northern New England Collaboration Clear as mud - (pdf 3.6 MB)

Data Items:

  • Data Security, John Hopkins, Core Operations Manager - (pdf 300 KB)
  • Data Security: Central Registry Perspective, Missouri Cancer Registry - (pdf 90 KB)
  • Eureka's Data Miner - (pdf 1.7 MB)
  • Improving the Quality of Geocoded Data - (pdf 630 KB)
  • Mapper Plus - (pdf 360 KB)
  • National Audit Results NPCR Data Completeness and Quality Audits - (pdf 160 KB)

Death Clearance:

  • Tennessee Cancer Registry Death Clearance Tracking System - (pdf 4.4 MB)

Electronic Pathology and Electronic Death Registration:

  • Electronic Pathology (ePath) Reporting Project Update - (pdf 130 KB)
  • Epath An Arkansas Overview - (pdf 1.1 MB)
  • Overview of Electronic Death Registration - (pdf 300 KB)

NPCR Updates:

Quality Data:

  • NPCR Education & Training Coordinators Using Education to Drive Quality - (pdf 500 KB)

Using Your Data:

  • Determining Cancer Burden in Resource Limited Settings - (pdf 5.5 MB)
  • Health Survey Study of Individuals Potentially Exposed to VOC-Contaminated Drinking Water at US Marine Corps (USMC) Base Camp Lejeune - (pdf 175 KB)
  • The Tohono O odham Nation CCC Planning Grant Data Experience - (pdf 2 MB)
  • Update on the National Environment Public Health Tracking Network - (pdf 4.2 MB)

Racial Misclassification and the use of Surnames:

  • Racial Misclassification of American Indians in the Oklahoma Central Cancer Registry - (pdf 85 KB)
  • Identifying Latino and Asian Populations through the use of Surnames - (pdf 180 KB)

Regional Challenges:

  • Special Challenges in Appalachia - (pdf 444KB) - (pdf 3.3 MB)

Veterans Affairs:

  • The Road to VA Data Patience Persistence & Penalties Missouri Cancer Registry - (pdf 50 KB)
  • VA Reporting Process - (pdf 110 KB)

Funding for this website was made possible by a cooperative agreement from the Centers for Disease Control and Prevention, through the following:
Pacific CEED, award #: 5U58DP000976, Pacific Regional Central Cancer Registry, award #: 5U58DP000835; Regional Comprehensive Cancer Control Program, award #: U55/CCU923887.
The views expressed on this site do not necessarily reflect the official policies of the Department of Health and Human Services;
nor does mention of trade names, commercial practices, or organizations imply endorsement by them or the U.S. Government.
Funding Sources: PRCCR: #: 5U58DP000835  | Pacific CEED: #: 5U58DP000976 | RCCC: #: U55/CCU923887 

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