The CRN Connection, Summer 2013

In this issue:

Updates from the Coordinating Center

Photograph of Heather Clancy

Year One

The end of Year 1 is right around the corner. With the closing of the first year we have submitted our first Progress Report and are pulling together an Annual Evaluation. We are also in the midst of reviewing full Pilot & Developmental Project applications, of which we received 24 and are expecting to fund between 4 and 6.

Site Visits

We are preparing to go on a number of Site Visits by the end of this calendar year. The first stops are to Marshfield Clinic Research Foundation, in Marshfield, WI and to one or our Affiliate Sites, HealthPartners Institute for Education and Research (HPIER) in Minneapolis, MN. Members from the Executive Committee, including an NCI representative, and one member of the Informatics Core will attend each Site Visit. Generally, the purpose of these Site Visits is to:

We are looking forward to meeting each Site's team and to learn more about each Site's activities in the upcoming years!

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Welcoming Dr. Stacey Honda, KP Hawaii

Photograph of Stacey Honda

We would like to welcome and introduce Dr. Stacey Honda as the new Site Principal Investigator at KP Hawaii. Dr. Honda is currently the Medical Director for the Center for Health Research in Hawaii. In her own words, she provides us with an introduction:

"I am a pathologist by training but my background is in research. With my undergraduate and graduate research experience as well as having practiced general pathology now for over 15 years, my interests cover a wide range of topics and diseases. One area of particular interest is in cancer: colon, breast, prostate, hematologic particularly myeloma. My past and current research has focused on topics including immunology, fish toxins, hypercoagulable states, as well as women's health. My interests also include translational medicine and comparative effectiveness research and I have experience working with tissue samples including paraffin embedded tissue.

I am also involved with developing a closer partnership between our research center and our medical group/care delivery system. As Associate Medical Director of Ancillary Specialties where I oversee lab/pathology, diagnostic imaging and pharmacy, I work closely with the medical group and care delivery system and can help to integrate research into care delivery as well as disseminate and communicate research findings and thus help directly translate research into practice. We are currently involved with a pragmatic trial in pain management which looks to incorporate into primary care a multidisciplinary approach to pain management. And we have a number of areas of interest throughout our care delivery system to do more projects that integrate into the care delivery system.

In my free time I enjoy traveling, listening to country musicExternal Web Site Policy and watching sporting events (favorite football team is the Dallas CowboysExternal Web Site Policy!). I particularly enjoy traveling to Nashville for the annual CMA country music festival whenever I can as well as attending concerts and award shows. Other favorite destinations include Las Vegas as well as shopping destinations like the Mall of America in Minneapolis."

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Updates from the National Cancer Institute

Photographs of Ann Geiger, Emilee Pressman, and Alyssa Grauman

We are very pleased to welcome Ann GeigerExternal Web Site Policy as the new Chief of the Health Services and Economics Branch in the Division of Cancer Control and Population Sciences, effective July 1, 2013. This position was previously held by Martin Brown, who served as the CRN Program Director until 2012. Ann comes to us by way of Wake Forest University, where she was an Associate Professor in the School of Medicine. She also has longstanding ties to the CRN: she was on the very first call about the planning of the first CRN submission; she was the first site Principal Investigator at Kaiser Permanente Southern California; she led the formation of the first New Proposals Committee; she has participated in multiple CRN projects including BOW I and II, DCIS, PROTECTS, and DETECT, and she has served as the leader of the CRN Survivorship Scientific Interest Group. We look forward to her continued involvement with the CRN as she takes on this new role.

We are also sad to report that Emilee Pressman, the CRN Program Director, will be leaving us at the end of June. Emilee has accepted a position as a Public Health Advisor in the Surveillance Research Program of DCCPS. We will miss her and wish her the best of luck!

Finally, we would like to welcome Alyssa Grauman, who will be taking over for Emilee as CRN Program Director. Alyssa is excited to return to the CRN team after a two year hiatus. She brings to this role about 8 years of project and administrative management support experience. Alyssa received both her BS in Biology and her MPH in Hospital and Molecular Epidemiology from the University of Michigan and has a good understanding of how to get things done from an administrative standpoint at NCI!

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Research Highlights

Pediatric Cancer Risk and CT Scans

Photograph of Diana Miglioretti

A study supported by CRN pilot funds examining trends in computed tomography (CT) use in children and associated radiation exposure was published online in JAMA PediatricsExternal Web Site Policy and is accompanied by an editorial by the journal. The retrospective study, led by Diana Miglioretti, a member of the CRN Executive Committee and Informatics Core, was conducted in diverse male and female children less than 15 years-old who were enrolled in seven integrated health-care systems: Group Health Cooperative in Washington; Kaiser Permanente in Colorado, Georgia, Hawaii, and the Northwest, Marshfield Clinic in Wisconsin, and Henry Ford Health System in Michigan. The CRN investigators examined CT utilization data from six of the health-care systems and found that CT use increased 2- to 3-fold from 1996-2005, stabilized between 2005-2007, then started to decline between 2007-2010. Radiation doses and estimated cancer risk were calculated by examining 744 random CTs of the head, abdomen/ pelvis, chest and spine conducted from 2001 through 2011 at five of the health systems. They found that patient radiation doses were highly variable, even for exams of the same anatomic region. Based on the observed distribution in doses, they projected that the 4 million CT scans of the most commonly imaged organs conducted in children in the US each year could result in approximately 4,870 future cancers. Reducing the highest 25 percent of radiation doses could prevent 2,090 -- or 43 percent -- of these future cancers. By also eliminating unnecessary imaging, 3,020 -- or 62 percent -- of cancers could be prevented.

Read the full article.External Web Site Policy

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Lynch Syndrome Testing Found to be Underutilized

Very few Cancer Research Network patients diagnosed with advanced colorectal cancer from 2004-2009 were tested for Lynch syndrome, an inherited mutation that is often passed from parents to children and can greatly increase the risk for colon and other cancers. Current Centers for Disease Control and Prevention (CDC) guidelines suggest that all patients newly diagnosed with colorectal cancer should be offered a test for Lynch syndrome, but guidelines in effect during the study period suggested that only patients with a strong family history of colorectal cancer be offered the test.

Researchers Deanna Cross, PhD, from Marshfield Clinic Research Foundation, and Alanna Kulchak Rahm, PhD, MS, from Kaiser Permanente Colorado, examined the medical records of 1,188 patients with advanced colorectal cancer from seven integrated health-care delivery systems in the Cancer Research Network. Twenty-two percent (261) of patients had enough family history documentation to meet the criteria for testing, yet only 3 percent (41) were tested.

In 2009, after data for this study was collected, the CDC's Evaluation of Genetic Applications in Practice and Prevention (EGAPP) group recommended offering Lynch syndrome testing to all newly diagnosed colon cancer patients, not just those with a family history of colon cancer. EGAPP said they made the recommendation for universal screening to reduce mortality and morbidity in relatives of patients with Lynch syndrome. Children have a 50 percent chance of inheriting the syndrome from their parents and people with Lynch syndrome have up to an 80 percent lifetime risk of developing colon cancer. EGAPP suggested that if relatives also test positive for Lynch syndrome they can start screening for cancer at an earlier age when it is more treatable.

Universal screening is not accepted by all professional bodies, but many health systems are starting to use this approach. In the past couple of years at least two of the integrated health care systems in the study started screening more colorectal cancer patients for Lynch syndrome. Kaiser Permanente Northern California screens all newly diagnosed colon cancer patients in eight of its 21 surgery centers and is working to expand screening to all centers within the next two years.

At Kaiser Permanente Northwest, researchers are conducting a clinical trial designed to screen more colon cancer patients for Lynch syndrome, and to educate physicians and medical staff about the importance of identifying these patients. This study is led by Katrina Goddard, PhD, from the Kaiser Permanente Center for Health Research and a co-author of the utilization paper.

Read the study published in Genetics in Medicine.External Web Site Policy

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VDW Working Groups: Call to Action

One of the important resources of the Cancer Research Network is the Virtual Data Warehouse (VDW). The VDW is not a centralized data warehouse -- it is "virtual", consisting of parallel databases with identical formats set up at each of the HCSRN/CRN sites. The common formats support research projects by facilitating merging of data across sites. These databases have been constructed by extracting data directly from the local electronic data systems and reconfiguring them to use standard variable names and coded values. The VDW is not an analytic dataset. It is a very rich collection of information from which analytic datasets can be constructed.

Current VDW data content areas are: vital signs, census, enrollment and demographics, pharmacy, tumor, utilization, laboratory, mortality, and social history. New areas are under development, including infusion therapy, orders, and dentistry. Each content area is guided by a VDW Working Group, usually co-led by a site programmer and an investigator. Other working group participants include a cross-site mix of programmers, analysts, and investigators who participate in monthly conference calls with a focus on development of quality assurance plans and improvements to their content areas.

Investigator participation in the working groups is critical to ensure that all decisions and new developments respond to the most pressing needs of our current and future research agendas. Participation does not require large amounts of time, just short, intense bursts of attention. If you join a working group, your reward will be the existence of an improved VDW that is better suited to your research needs! Here is a list of working groups, meeting times and leads.

To learn how to get involved, contact Heather Clancy at the CRN Coordinating Center.

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Join a Scientific Working Group Call

Please visit the CRN Web site to find out more information on the Scientific Working Groups, and to contact those you might want to participate with.

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New AHRQ Funding Announcement!

Disseminating Patient Centered Outcomes Research to Improve Healthcare Delivery (R18)

The purpose of this FOA is to disseminate and implement existing evidence for improving the quality of health care delivery. Applicants are required to demonstrate the ability and commitment to leverage the capacities of existing broad-based networks of providers and other key stakeholders in their dissemination and implementation activities.

LOI due August 26, 2013. See official posting for full details.

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Upcoming Conferences

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For further information about the CRN, please visit our Web site at http://crn.cancer.gov.