Keeper of the Cancer Stats
How do we know if teens on the seacoast are tanning too much? Where do we turn if we suspect a cancer cluster in Bethlehem? The answers lie in the New Hampshire State Cancer Registry (NHSCR), the state's most detailed information on cancer.
Celebrating its 25th anniversary this fall, the New Hampshire State Cancer Registry (NHSCR) is an infinitely rich source of data for cancer researchers and physicians as they seek to understand cancer's complexities and mysteries, particularly with regard to cancer's impact on the citizens of New Hampshire.
On September 21, NHSCR will celebrate the anniversary and host its annual training meeting for cancer registrars at Elliot Hospital in Manchester, NH.
A cancer registry is, on its face, deceptively simple: it is a population-based cancer surveillance program for a given region – in NHSCR's case, the state of New Hampshire—that collects incidence data on all cancer cases diagnosed or treated in the region. NHSCR currently collects cancer reports from hospital registrars in all the large hospitals in New Hampshire. Hospitals with fewer than 105 cases per year generally do not have their own cancer registry, but NHSCR staff helps these hospitals with some of their reporting duties to make the registry as complete as possible. NHSCR also receives case reports from physician practices, free standing radiation oncology centers, out-of-state pathology laboratories, and other sources. In addition, the NHSCR receives case reports for New Hampshire residents who are diagnosed outside the state, based on inter-state data exchange agreements.
"Having local data is more important than a lot of people might think," says Judy Rees, BM, BCh, MPH, PhD, who has directed the New Hampshire registry since 2004, taking over from prior director Robert Greenberg, MD . "One of the most important things that a registry can show is that local areas can have different rates of different kinds of cancer compared to other areas. That can point to local activities health care workers need to be involved in."
An example is a statistically significant cluster of pancreatic and breast cancer cases centered in the northern New Hampshire town of Bethlehem, which was uncovered using NHSCR data. While no environmental causes for the local clusters were found, the investigation by the Department of Health and Human Services led to some very productive interactions and collaborations with community groups.
Melanoma prevention success story
Rees points to New Hampshire's higher-than-average rate of melanoma among young women as an example of NHSCR's utility. Collected in partnership with the New Hampshire Environmental Public Health Tracking Program, NHSCR data revealed that the 2002-2006 melanoma rate for New Hampshire females aged 15-39 was 38 percent higher than that of non-Hispanic whites nationally in that age group, according to a comparison with data from the Surveillance, Epidemiology and End Results (SEER) Program, the primary source for cancer statistics in the United States. While some of this striking increase likely resulted from improved case ascertainment practices in New Hampshire, the marked difference in NH/SEER ratios for this group suggested a real change in melanoma rates in this group in the state.
The most likely explanation for a true incidence increase of the magnitude seen may relate to ultraviolet radiation (UVR) exposure, the leading cause of melanoma. The NHSCR data provided the New Hampshire Comprehensive Cancer Collaboration's Sun Safety Work Group (SSWG) with evidence to reinforce their work on the topic of teens and tanning. SSWG's projects include increasing awareness of the dangers of indoor tanning and working to strengthen the laws around teens and tanning. SSWG teamed up with New England Melanoma Foundation to present a Teen Tanning forum on March 23, 2011 in Concord, NH, for NH High school students, informing them of the dangers, especially melanoma, associated with indoor tanning.
"There's very little you can do in the cancer prevention world without data," states Dr. Rees.
NHSCR data have also supported dozens of published research studies and several prevention programs and activities, including the work of Margaret Karagas, PhD, co-director of NCCC's Cancer Epidemiology and Chemoprevention Research Program, on the linkages between arsenic and non-melanoma skin cancer.
The importance to cancer research
"The registry's data are very useful as a basis for generating studies," notes Bob Greenberg, MD, now with the Fred Hutchinson Cancer Research Center in Seattle. He worked with New Hampshire registries since the 1970s, when Frank Lane, MD, one of the founders of Norris Cotton Cancer Center, established a tumor registry for New Hampshire and Vermont that served as a model for NHSCR, which was then founded by Dan Freeman, PhD.
The initial reports were two-part paper forms. "I would visit all 29 hospitals in New Hampshire quarterly and review pathology reports and discharge disease indices for completeness of case finding," said Shirley Foret, CTR, the first cancer registrar for NHSCR. "The facility was responsible for submitting any cases that were missed." Foret also visited individual pathology labs and mental health facilities as well as Vermont hospitals to ensure accurate reporting of cancer cases in the state.
Timely reporting of cancer statistics
Today, NHSCR has an innovative, two-phase reporting system. An initial "rapid" report provides the most elemental aspects of case identification and is submitted within 45 days of diagnosis. A definitive case report is transmitted within 180 days from the date of diagnosis, and includes more detailed information, such as treatment and staging information. Timely reporting is essential for registry activities.
NHSCR is supported by the Centers for Disease Control and Prevention's National Program of Cancer Registries (NPCR) through a cooperative agreement awarded to the New Hampshire Department of Health and Human Services, Division of Public Health Services, Bureau of Disease Control and Health Statistics, Health Statistics and Data Management Section.
September 24, 2012
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