title: Connecting the Dots: Linking the National Program of Cancer Registries and the Needs of Survivors and Clinicians.
abstract: Cancer survivors, the medical community, public health professionals, researchers, and policymakers all need information about newly diagnosed cancer cases and deaths to better understand and address the disease burden. CDC collects cancer data on 96% of the U.S. population through the National Program of Cancer Registries. The National Program of Cancer Registries routinely collects data on all cancer occurrences, deaths, and the types of initial treatment received by the patients, and recently CDC has made advances in its cancer surveillance activities that have direct applicability to cancer survivorship research and care. This article examines CDC's innovative uses of the National Program of Cancer Registries infrastructure and data as a recruitment source for survivorship research studies and behavioral interventions; comparative effectiveness and patient-centered outcomes research; and the collection, consolidation, and dissemination of treatment summaries for cancer survivors and their providers. This paper also discusses long-term, idealistic plans for additional data linkages and sharing among public health, providers, and the cancer survivor through innovative concepts such as patient portals and rapid-learning health care.
authors.affiliation: Division of Cancer Prevention and Control, CDC, Atlanta, Georgia. Electronic address: aryerson@cdc.gov.
authors.forename: A Blythe
authors.initials: AB
authors.lastname: Ryerson
authors.affiliation: Division of Cancer Prevention and Control, CDC, Atlanta, Georgia.
authors.forename: Christie
authors.initials: C
authors.lastname: Eheman
authors.affiliation: Division of Cancer Prevention and Control, CDC, Atlanta, Georgia.
authors.forename: Timothy
authors.initials: T
authors.lastname: Styles
authors.affiliation: Colorado Central Cancer Registry, Colorado Department of Public Health and Environment, Denver, Colorado.
authors.forename: Randi
authors.initials: R
authors.lastname: Rycroft
authors.affiliation: Division of General Internal Medicine, Johns Hopkins School of Medicine; Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland; Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, Maryland.
authors.forename: Claire
authors.initials: C
authors.lastname: Snyder
mesh_terms: D035843:Biomedical Research; D002487:Centers for Disease Control and Prevention, U.S.; D057286:Electronic Health Records; D006801:Humans; D033181:Information Dissemination; D009369:Neoplasms / Q000453:epidemiology*; D010347:Patient Care Planning; D063868:Patient Outcome Assessment; D018579:Patient Selection; D011634:Public Health; D012042:Registries; D017741:Survivors; D014481:United States / Q000453:epidemiology