The CoC Source - March 30, 2012
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The Comprehensive Cancer Control National Partnership Website:

The Comprehensive Cancer Control National Partnership (CCCNP) has launched a website ( that provides information about the CCCNP and its activities. The site shares news, resources, and tools that may be useful to the CCC coalitions in states, tribes, and territories.

What’s on
  • New and existing resources developed by the CCCNP collectively, individual national partner organizations, and CCC coalitions
  • Highlights of individual partner organization’s work relevant to CCC coalitions and comprehensive cancer control nationally
  • News on CCCNP current and upcoming events and/or initiatives

How can I use the information on

  • Find information about CCCNP member organizations and links to their websites
  • Explore links to CCC-related resources and tools that are relevant to your organization and coalition
  • Get the latest information about CCC-related events
  • Share the badge on your organization or coalition website so your partners can gain access to important CCC-specific information and tools they can use

The CCCNP, a partnership of 16 national organizations whose mission is to support CCC coalitions, developed and sponsors the website.  The CoC has been a member of the national partnership since its inception and continually works with its 1,500 accredited cancer programs, the physician champions in place in each program, and surgeon leaders at the state level to foster participation in, and support of, state cancer coalition work.  To learn more about the CCCNP visit

CoC to Exhibit at the NCRA

The CoC will host an exhibit at the National Cancer Registrars Association (NCRA), April 18-21, at the Gaylord National Hotel and Convention Center in Washington, DC.  If you are attending this meeting, stop by the CoC booth and review the CoC’s new materials. To learn more about the CoC, visit

Best Practice Repository 2012 – Look What’s New

Check out what’s new on Best Practice Repository 2012.  We have been working diligently to develop, review, and post examples and resources to help cancer programs meet the Commission on Cancer Program Standards. This month we have a number of new examples and resources posted. For standard 3.1, there is an example of a patient navigation process which was driven by a community needs assessment. It is established to address health care disparities and barriers to care for patients. For standard 1.12, there is a great example of an annual report developed by the cancer committee which includes patient outcomes and is disseminated to the public to earn commendation for this standard. For standard 1.1, there is a bylaws statement that addresses the need for board-certified physicians and the process of becoming board certified. These are just a few examples of what’s new on the Best Practice Repository 2012. We encourage you to login and check it out.

Although we currently have many best practice examples and links to resources posted for many of the standards, our goal is to have a best practice example or resource for each standard. We encourage all accredited programs to share their examples and resources by submitting them to the Best Practice Repository mail box at Once a document(s) is submitted for best practice consideration, it will be reviewed by the Accreditation Team for appropriateness. An e-mail confirmation will be sent out, along with a permission form that requires a signature and gives the CoC permission to post the document(s). After the signed permission is received, the document will be sent to the Standards Advisory Group (SAG) for final review. 

What’s New on the CAnswer Forum

On April 15, 2012, the CoC will remove the archived Inquiry and Response (I&R) database from the CAnswer Forum.  After reviewing the old system we found many questions are out of date and, as such, are now incorrect.  With the Facility Oncology Registry Data Standards (FORDS) we have seen several instances in which obsolete I&R responses are being picked up, followed, or even perpetuated in trainings.  For Collaborative Stage (CS), the answers in I&R pertain to v0202, and registrars should be using v0203 and moving in the next few months to v0204.  There are very few questions in the I&R database on the 7th edition AJCC Cancer Staging Manual.  For the new standards, all question and answers are found in the CAnswer Forum. To avoid any further confusion and eliminate the possibility of abstracting errors, the archived I&R will be removed.  We encourage everyone to use the appropriate versions of manuals and reference materials.  If you still have questions, join the CAnswer Forum and search the for answers before submitting a new question.

Forum Monthly Highlight:  Search Process/Using Tags

Each month we will highlight one of the functions of the CAnswer Forum.  Our goal is to make the CAnswer Forum users aware of the many helpful functions in the system. We will start with the search process and how to use tags.

To quickly find a question (thread) or answer (reply) of interest anywhere on the forum, click on the “Search” link in the navigation bar at the top of most Forum pages. Then, type in the keyword or phrase you wish to search for and select either ‘Show Threads’ or ‘Show Posts’ to view the results.  By selecting posts, you will be shown only the actual posts in which the search word appears.  For more control over the search select ‘Advanced Search’ from the drop-down box.  The advanced search page allows you to restrict your search to individual forums, find questions and answers by user, or return results based on tags.

Tags are a useful way to search for threads with similar subject matter and content.  This complements the normal search system; which searches only for certain words or phrases.  To use tags, you add words or phrases to threads to help describe the content.  For instance, if the subject matter is "class of case" then you can add the tag "class of case" to the tag list.  But you can also add tags like “diagnosed elsewhere”, and “first course treatment”, depending on the nature of the question.

Who adds tags?  Tags are initially added to a question by the user who asks the question.  Other users may also be able to add or remove tags. Tags are displayed in a box near the bottom of a question (thread) page.  Clicking on a tag will allow you to view other questions that have the same tag, and which may be related.  
We hope that you will find playing “tag” a useful search function within the CAnswer Forum.


Highlighting the 2012 Standards – Chapter 3: Continuum of Care

The CoC standards have historically focused on the structure needed to ensure high quality care and the process to provide active cancer treatment.  These areas remain a key focus, but the 2012 standards take a step forward to address health care recommendations set forth by the Institute of Medicine in several recent publications.  Chapter 3 includes three patient-centered standards that are essential to enhancing the cancer care experience for all patients.  Because these are new standards and will require planning for implementation, a three year phase in period (January 1, 2015) has been established for each of these standards.

Standard 3.1 – Patient Navigation Process

A general definition of navigation is to plan or follow a course.  In cancer care, navigation serves two purposes.  The most familiar navigation is a process that assists patients to obtain the proper assessment and treatment thereby promoting the best treatment outcomes.  Navigation can also examine and address barriers or disparities patients face to obtaining healthcare.  Barriers and disparities may include financial issues which prevent the patient’s access to screening and diagnostic services or transportation issues which limit the choices for treatment.

The patient navigation standard asks that the cancer committee assess their community to identify barriers to care and disparities and to implement a navigation process or processes that help to remove these barriers and disparities.  The standard gives discretion to the cancer committee for defining the community that will be evaluated and the methods used for the evaluation.  The committee may start with the facility’s current patients and move on to evaluate residents of the facility’s catchment area.  The assessment is performed on a three-year cycle, so this should be broad enough to identify several barriers that can be addressed during the interim period.

Based on the assessment, the committee will identify the priority or priorities to be addressed by a navigation process each year.  Though some issues may be common among several programs, the priorities identified and the methods used to address them will be different for each program. 

The committee will document the full scope of the process which includes identifying the barrier or disparity, methods used to address the issue, and how success of the navigation process will be evaluated.  This description and the results of the navigation process each year will be attached to the Survey Application Record (SAR) and discussed with the surveyor during the survey.

Standard 3.2 Psychosocial Distress Screening

Patients dealing with serious diseases will experience psychosocial distress.  Among other issues, patients may be concerned about how they will be perceived by friends and family; whether they will be able to return to work after treatment; and how to pay their medical bills.  Identifying these stresses and providing resources to help patients cope is the focus of this standard.

The cancer committee should call on the expertise of social workers, clinical psychologists, and other mental health professionals available to them when designing the psychosocial distress screening process.  This will include choosing a screening tool (the distress thermometer is a common choice) as well as the timing of screening, and methods and resources that are provided to patients.  Some patients will require screening and treatment shortly after diagnosis while others will feel the most distress when treatment is completed and they are transitioning to follow-up care.  The process should allow for customization based on the patient’s needs.

The process for psychosocial distress screening and the provision of care is attached to the SAR along with cancer committee minutes that document discussion, development, and evaluation of the process.

Standard 3.3 Survivorship Care Plan

A survivorship care plan encompasses information about the patient’s diagnosis and treatment (care summary) as well as important information the patient will need now that treatment is completed.  The care plan may include information on symptoms to watch for as well as an outline or schedule for follow up screening tests or exams based on evidence-based standards of care.

While the standard applies to patients who are completing the first course of treatment following diagnosis, the cancer committee may also want to provide care plans to patients completing treatment for metastatic disease or for those patients whose treatment may extend for longer periods, e.g. hormone therapy for prostate cancer patients.  The minimum requirements for the care plan are outlined in the cancer survivorship care planning fact sheet which is available at

All of the providers who participated in the patient’s treatment should contribute to development of the care plan.  As with the other standards in this chapter, when, how, and by whom the plan is given to the patient is a process developed by the cancer committee and evaluated annually.  The cancer committee will describe the process and methods as well as the evaluation process with the surveyor and provides cancer committee minutes that demonstrate the annual evaluation of the process.

By implementing these standards that focus on the patient, the CoC and CoC-accredited cancer programs will demonstrate the importance of including patient needs in the provision of high-quality cancer care.

Next Month – Chapter 4 - Patient Outcomes

Is Your CLP Getting Educated on Their New Role?

The new Cancer Liaison Physician (CLP) role defined in Standard 4.3 is well underway.  Newly appointed and reappointed CLPs must participate in the five webinar educational series outlining CLP duties.  The following numbers indicate just how engaged our CLPs are and how seriously they take their role within their facility.  The Commission on Cancer thanks you for your efforts and time.

For the time period from January 1, 2011 to present:
Orientation to the Cancer Liaison Physician Role: Focus on Improving the Quality of Cancer Care -
793 participants  
Analyzing and Reporting Your Cancer Program's Quality Data -
565 participants
How to Navigate the National Cancer Data Base Tools: A Primer -
609 participants
Putting the National Cancer Data Base Tools to Work - 566 participants
Becoming an American Cancer Society Liaison - 523

If you have not yet viewed the CLP webinar series, please access them from the CLP Information Board on the website at

Instructions are also available at

Please keep in mind the login information you use to enter CoCDatalinks is NOT the login information you would use to access the webinars.  You must create an account.  If you have questions, please contact us at

The RQRS Experience: Change is not easy, but it is worth it!

This month, three beta test programs shared their experiences using the Rapid Quality Reporting System (RQRS) with more than 50 workshop participants.  Nancy Johnson, the cancer program administrator at the St. Joseph’s/Candler Health System in Savannah, GA, described how her cancer program has changed operations to include RQRS.  In implementing RQRS, the system faced challenges including the need to address redundancies, implement functional changes, and respond to staffing constraints.  However, through the integration of RQRS into the cancer program, Ms. Johnson has found increased teamwork with the breaking down of silos and the enhancement of corresponding synergy and team problem solving.  Improvements have also been found in data integrity including the accuracy and timeliness of data within the cancer registry. As with all cancer programs, improved patient care is the focus of St. Joseph’s/Candler Health System’s desire to participate in any quality program, including RQRS. Improvements in patient care have also been found through the opportunity for patient education and ensuring the treatment plan is followed using the RQRS alerts. After her experience, Ms. Johnson acknowledges the difficulty of change, but she contends that with the benefits to her cancer program and patients, RQRS is worth it!

For more information on the RQRS system please visit the RQRS web page:

Updated Registry Plus Online Help Version 12.1 for 2011

A new version of Registry Plus Online Help (RPOH) has been released by the Centers for Disease Control and Prevention (CDC) Division of Cancer Prevention and Control, Cancer Surveillance Branch.  This new version is available at provides online versions of FORDS, the SEER coding manual, Collaborative Stage manual, and other resources in a free, easy-to-use package.

RPOH is an integrated, user-friendly help system for cancer registrars and others who work with cancer data. Developed in support of the CDC's National Program of Cancer Registries (NPCR), RPOH facilitates the abstraction of cancer cases by centralizing standard abstracting and coding manuals into one accessible, easy-to-use resource. The manuals within RPOH are cross-referenced, indexed, and context-linked, making the information readily available to the user and eliminating the need for printed manuals.

The following manuals are included in this release:
  • North American Association of Central Cancer Registries’, (NAACCR) Data Standards and Data Dictionary for record layout version 12.1
  • Online help for the NAACCR Edits Metafile V12.1B
  • FORDS (Facility Oncology Registry Data Standards): Revised for 2011
  • Surveillance Epidemiology and End Results (SEER) Program Coding and Staging Manual 2011
  • Collaborative Stage Data Collection System [CS]: User Documentation and Coding Instructions, Version 02.03 (including both Parts I and II)
    :  The manual for version 02.04 in online help format is available as a stand-alone product at, and will be incorporated into RPOH in 2012.
  • ICD-O-3, Introductory Material and Morphology Numerical Lists
  • SEER Multiple Primary and Histology Coding Rules

RPOH for 2012, corresponding to NAACCR version 12.2, is scheduled for release in spring of 2012. It will incorporate FORDS: Revised for 2012.

Registry Plus Online Help is part of the Registry Plus software suite for cancer registries.

Survey Savvy and Rapid Quality Reporting System (RQRS) Workshops in 2013

The CoC will host the next Survey Savvy and RQRS workshops concurrently in late Spring/early Summer 2013 in Chicago, Illinois and dates will be announced in the Flash as soon as they become available.  The most recent Survey Savvy held in early March in Chicago was met with resounding success and we are confident that all cancer program staff who attended will be off to a great start in implementing the new Standards, and will be better prepared to support their program as a result.  As we are always striving to best meet the needs of our accredited programs, the CoC staff is diligently planning next year’s workshop to make it better than ever, focusing on providing more advanced content for meeting the Standards than what has been provided in the 2011 and 2012 Survey Savvy workshops.

The 2013 Survey Savvy will be targeted to programs seeking best practice examples of meeting the Standards, and presenters will come from select CoC-accredited programs that have done so. We strongly encourage multiple members of your program staff to attend. Breakout sessions will also be added to the workshop so that the staff attending can collaborate and problem solve; receiving immediate feedback on their results.

The fee to attend Survey Savvy in 2013 is $600 per person, so be sure to budget for all of your staff planning to attend next year.

The RQRS workshop will be geared toward the new user, with best practice examples provided by participating cancer program staff from CoC-accredited cancer programs. This workshop will cost $200 for participants also attending the Survey Savvy workshop and $250 for those attending only the RQRS workshop.

Take Advantage of CoC Support to Ensure Compliance with the New 2012 Patient-Centered Standards

Has your cancer program started assessing strategies for implementation of the new CoC patient-centered standards scheduled for implementation in 2015?  If not, don’t procrastinate any longer.  It is important for the cancer committee to form a work group or task force to start developing the project plan for implementation of these new standards to ensure successful compliance.

A good start would be to gather your team to review the new webinars launched in December 2011 focused on Survivorship Care Plans and Psychosocial Distress Screening, Tools, and Resources.  Both of these one-hour presentations give detailed information on implementation strategies to support these two new standards.

Cancer Program Standards 2012 Continuum of Care Services: Focus on Survivorship Care Plans provides participants with information about the definition and requirements, process, documentation, and compliance expectations for Standard 3.3 Survivorship Care Plan.  In addition, the presentation will define survivor care plans and the evidence to support their development and distribution to cancer patients completing treatment, and will include an overview of the Journey Forward Survivorship Care Plan Builder along with a case study demonstrating its implementation.  Presenters include staff from the CoC, National Coalition for Cancer Survivorship, and Spartanburg Regional Healthcare System in South Carolina.  

Cancer Program Standards 2012 Continuum of Care Services: Focus on Psychosocial Distress Screening, Tools and Resources provides participants with information about the definition and requirements, process, documentation, and compliance expectation for Standard 3.2 Psychosocial Distress Screening.  In addition, the presentation will define psychosocial distress screening, and provide examples of tools and resources to assist in the development of a screening process.  We are pleased to have Dr. Lynne Wagner from Northwestern Medical Faculty Foundation presenting this important topic.  Dr. Wagner also serves as the CoC’s representative from the American Psychosocial Oncology Society.

We encourage you and your team to visit the CoC Online Education Portal to learn more and purchase these webinars at the low cost of $50 each.  Get your team started on the road toward compliance with these new patient-centered standards.  



CS Education at 2012 NCRA Annual Conference

We invite you to take part in the pre-conference exercise for the Interactive Discussion of
Part I CS Coding Instructions plenary session that will take place at this year's NCRA Annual Conference. The online survey will allow participants in this session to answer staging questions before the conference and get clarification on these specific cases at the plenary session. Even if you cannot attend the NCRA conference we still encourage you to participate in this educational activity.  The answers, along with the rationale, will be posted on the CS website after the meeting for all to review.

There are five (5) questions that present examples of real life staging questions that require the use of the Part I CS Coding Instructions. The survey should take about thirty (30) minutes to complete. Please allow yourself enough time to complete the questions and make use of the Coding Instructions found at 

NOTE: You should be using v0204 Coding Instructions for these questions – even if you are still using a previous version in your registry.

All responses must be submitted by APRIL 6, 2012. Good luck and thank you for participating!


NAPBC Requires Data Submission Beginning July 1, 2012  

Quality care has become the new definition of value in healthcare.  Initiatives to assess quality care exist for breast centers as a program and for each clinical discipline.  Each program has a spectrum of measures designed to assess their own discipline  The NAPBC is in a unique position to assess quality multidisciplinary care and has designed a standard, Standard 6.2 – Quality Improvement, that will begin to monitor performance rates for specific performance measures on an annual basis.  

Standard 6.2 will be required for compliance by centers applying for initial accreditation and those undergoing re-accreditation beginning in 2013. A phase-in component of this new standard will require all centers to submit aggregate data demonstrating center compliance with six quality measures outlined as part of Standard 6.2.




Breast conservation surgery rate for women with AJCC Stage 0, I or II breast cancer.2.


Needle/core biopsy is performed prior to surgical treatment of breast cancer.


Radiation therapy is administered within 1 year (365 days) of diagnosis for women under age 70 receiving breast conserving surgery for breast cancer.


Radiation therapy is considered or administered within 1 year (365 days) of diagnosis for women undergoing mastectomy for breast cancer with four or more positive regional lymph nodes. 


Combination chemotherapy is considered or administered within 4 months (120 days) of diagnosis for women under the age of 70 with AJCC T1c, Stage II or III hormone receptor negative breast cancer.


Tamoxifen or third generation aromatase inhibitor is considered or administered within 1 year (365 days) of diagnosis for women with AJCC T1c, Stage II or III hormone receptor positive breast cancer.

A "Performance Measures" section has been added to the Survey Application Record (SAR). Beginning July 1 through September 30, 2012 the NAPBC will issue a "Call for Data" to all accredited centers and those scheduled for initial survey requiring aggregate data entry for the six quality measures for patients treated in 2011.

The Performance Measures section will require completion of a Measures Eligibility Worksheet prior to calculating performance for each of the six measures. The data will establish a compliance rate for the center for each measure that will be displayed in the SAR. For those centers affiliated with a Commission on Cancer-accredited cancer program, these data will be retrievable from the cancer registry.

Centers due for survey between July 1 and December 31, 2012 will be required to do some duplicate data entry in the SAR to include the quality measures section AND Standards 2.3 Breast Conservation and Standard 2.9 Needle Biopsy. This will be corrected in the 2013 SAR.  

Following the Call for Data, the NAPBC will begin compiling the data and develop reporting tools that will allow accredited centers to compare their performance with other accredited centers.

Educational resources are currently being developed and will include a detailed instruction guide, a webinar to review and demonstrate the new section, and presentations at all future NAPBC workshops.

2012 NAPBC Standards Manual Update

The 2012 NAPBC Standards Manual is scheduled for its debut in mid-April.  This manual will include edits to Standard 2.5 – Breast Cancer Surveillance and Standard 2.16 – Genetic Evaluation and Management.  It will also include the new Standard 6.2 – Quality Improvement, which is outlined above.

All centers applying for accreditation or re-accreditation on or after June 1, 2012 will be required to follow the 2012 NAPBC Standards.  Edits to the Survey Application Record (SAR) will also reflect these changes.

Back by Popular Demand – Pursuing Excellence through Accreditation

Due to numerous requests, the NAPBC has scheduled another workshop, Pursuing Excellence through Accreditation, to be held at the American College of Surgeons headquarters in Chicago, IL, on Friday, June 29, 2012. This workshop will provide detailed information related to the NAPBC components and standards, survey process, and the new quality measures and related requirements. Attendance at this workshop will assist centers applying for accreditation, as well as centers due for reaccreditation in 2012 and beyond.  

NAPBC board members, surveyors, and staff will present information at the workshop. Most importantly, a presentation specific to the NAPBC components and standards, including an outline of the requirements for meeting compliance with each standard, will leave participants with vital information to take back to their centers. The workshop will also incorporate any changes that have been made to the standards so that there is a clear understanding of what is expected and how it will be measured. Another detailed presentation, titled What to Expect on the Day of Survey, will walk you through a site visit from a surveyor perspective. Learn about what the surveyor is looking for during different aspects of the survey.     

Pursuing Excellence through Accreditation is designed for individuals involved in the delivery of multidisciplinary breast health care, including physicians, nurses, administrators, cancer registry professionals, and others involved in the day-to-day operations of the breast center. Contact the NAPBC at or call 312-202-5185 to be placed on the list of individuals who will be notified when the workshop brochure is available. Registration opens on April 1, 2012.   

As these workshops are always well-attended and seating is limited, enrollment will be on a first-come, first-served basis.

NAPBC Exhibit Schedule

The NAPBC is scheduled to exhibit at the following national meetings:

American Society of Breast Disease
April 12–14, 2012
Four Seasons Resort
Dallas, TX

National Cancer Registrars Association
April 18-21, 2012
Gaylord National Hotel and Convention Center
Washington, DC

American Society of Breast Surgeons
May 2–6, 2012
JW Marriott Desert Ridge Resort and Spa
Phoenix, AZ

Stop by the exhibit hall at any one of these meetings and pick up an NAPBC Information Kit or additional information about the program.


Celebrate National Cancer Registrars Week

April 9–13, 2012
Cancer Registrars: Partners in Progress in the Nation’s Fight against Cancer

Cancer registrars throughout the world will join their colleagues, fellow medical professionals, and community leaders to observe the 16th annual National Cancer Registrars Week (NCRW), April 9-13, 2012. The purpose of NCRW is to emphasize the foundation that cancer registrars provide for cancer research, prevention, and treatment. The 2012 NCRW theme, Partners in Progress, reflects the role of the cancer registrar in partnering with the medical community for a cancer-free tomorrow.

Cancer registrars are data information specialists that collect and code patient-level data for cancer registries. The registries provide essential information to health care providers and health care officials to better monitor and improve cancer treatment, conduct research, and target cancer prevention and screening programs.

“This year’s theme—Partners in Progress—was chosen to acknowledge how cancer registrars are important allies in the fight against cancer. They play a pivotal role by capturing data—data used by researchers and medical professionals who are seeking to advance cancer prevention programs and treatment. We celebrate National Cancer Registrars Week to honor this important contribution,” notes NCRA president Melanie W. Rogan, certified tumor registrar.

Cancer registrars work in a variety of cancer treatment and research settings and manage a wide range of demographic and medical data regarding cancer patients.. The information is both submitted and utilized by state and national cancer registries to enable cancer programs to accurately determine cancer patient populations, measure outcomes of treatment and survival, and formulate plans for improvement. The collected data is included in numerous publications, including the prestigious Annual Report to the Nation on the Status of Cancer.  The Annual Report uses cancer registry data to provide updated information on cancer occurrence and trends, and is a collaboration of the American Cancer Society, the Centers for Disease Control and Prevention, the National Cancer Institute, and the North American Association of Central Cancer Registries.

Besides proclamations issued by a number of state governors, National Cancer Registrars Week activities include staff recognition events, professional development sessions, and displays promoting the work of the cancer registry and its value to public health.  

For more information on NCRW, visit To learn more about the great work cancer registrars are doing, go to

Participate in Cancer Support Community Programming

Kim Thiboldeaux, president and CEO of the Cancer Support Community, hosts a weekly radio broadcast titled Frankly Speaking About Cancer.  The March 20 program addressed the Legal Challenges to the Affordable Care Act.  We believe this program will be of interest to our colleagues in the CoC-accredited cancer programs. 

The program takes an in-depth look at President Obama’s Affordable Care Act and the legal challenges to it that were scheduled to be presented before the Supreme Court March 26 to March 28. How did President Obama manage to get the bill passed? What are the challenges being presented? What might the Supreme Court decide and what does it all mean to you? Our guests Karen Davenport, a research project director and lecturer at the department of health policy at George Washington University, and Peter Thomas, a principal of Powers Pyles Sutter & Verville, a Washington DC law firm that focuses on health care, education, and the law of tax-exempt organizations, will shed some light on the legal challenges and what you need to know.

These programs are free and accessible from the Cancer Support Community website at  You can also view other program offerings on this site, and obtain details about the weekly radio broadcast.  The Cancer Support Community has been a strong partner and a CoC member organization since 2009. 

Monthly Spotlight: National Society of Genetic Counselors and NSGC Familial Cancer Risk Counseling Special Interest Group

The Commission on Cancer regularly collaborates with over 50 member organizations in its mission to provide quality cancer care. This month we introduce the National Society of Genetic Counselors (NSGC).

The NSGC promotes the professional interests of genetic counselors and provides a network for professional communications. Local and national continuing education opportunities and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of belonging to the NSGC.

NSGC’s Familial Cancer Risk Genetic Counseling Special Interest Group (Cancer SIG) promotes communication between providers and affiliates of cancer genetic counseling services for the purpose of advancing the field of cancer genetic counseling.  Scott Weissman, current member and past co-chair of the NSGC Cancer SIG, serves as the NSGC liaison to the Commission on Cancer and can be contacted at

Event Information:
The 31st NSGC Annual Education Conference (AEC), October 24-27, 2012 will be held at the John B. Hynes Veterans Memorial Convention Center in beautiful Boston, MA. The AEC annually offers a notable slate of presentations on a diverse range of topics, as well as educational breakout sessions that allow for a smaller group discussion in specific areas of interest, including inherited cancer susceptibility syndromes and related medical management.  This year’s cancer related content  will feature relevant hereditary cancer topics including hereditary pancreatitis and pancreatic cancer, tumor-based analysis for Lynch syndrome, novel application of whole genome technologies to personalize oncology treatment, quality of life outcomes for individuals undergoing prophylactic surgeries, and psychosocial outcomes for unaffected women with BRCA mutations.

NSGC also hosts a variety of year-round educational opportunities offered online.  An online course is made available each summer and webinars are held throughout the year on various topics. 

Recent Publications and/or Products:
Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors
Riley B., Culver J., Skrzynia, C., et al. J Genet Couns, 13(2): 83-114 (2011)

Identification of Individuals at Risk for Lynch Syndrome Using Targeted Evaluations and Genetic Testing: National Society of Genetic Counselors and the Collaborative Group of the Americas on Inherited Colorectal Cancer Joint Practice Guideline
Weissman S.M., Burt R., Church J., et al.. J Genet Couns. (2011) [Epub ahead of print]

In addition, NSGC maintains a catalog of brochures, booklets and other printed resources on genetics, genetic counseling and genetic conditions.  These resources are ideal for use by physicians, other healthcare providers and genetic counselors in working with patients, their families and the general public.   To view the list of available publications, visit

For more information on this organization, please contact:
Meghan Carey, Executive Director, 401 N. Michigan Avenue, Suite 2200, Chicago, IL, 60611
Phone: 312-321-6834
| E-mail:


CDC Releases 1999-2009 National Program of Cancer Registries Data on CDC WONDER

The Centers for Disease Control and Prevention’s (CDC) Division of Cancer Prevention and Control supports states and territories in maintaining population-based registries that provide high-quality data through the National Program of Cancer Registries (NPCR). Cancer incidence data, submitted by the NPCR-funded registries to the CDC on an annual basis, are used to produce statistical reports and in various data analyses. In an effort to promote data use in a timely manner, the CDC has announced the early release of NPCR cancer incidence data for the years 1999–2009 to facilitate cancer control planning. The data are available through CDC WONDER at  CDC WONDER is an online query system that produces age-adjusted and crude rates in tabular, map, and chart formats.  Data are available by year of diagnosis, state, region or division of the U.S., gender, race (five groups), ethnicity, age group, primary site, and childhood cancer.

The data from selected NPCR registries cover between 86 and 96 percent of the U.S. population, depending on the specific year of diagnosis. This release is part of the NPCR Data Release Plan and is based on the NPCR Cancer Surveillance System 2012 data submission. The United States Cancer Statistics: 1999–2009 Incidence and Mortality Web-based Report, the official federal statistics on cancer incidence, will be released later this year. In addition to cancer incidence data from NPCR-funded cancer registries, this report will include cancer incidence data from registries funded by the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) Program, as well as cancer mortality data provided by the CDC’s National Center for Health Statistics.