Projects

Identifying Duplicate Cancer Cases across State Boundaries: Pseudonymization as a Method to Encrypt Identifiers

11/18/2020 – 06/30/2022

Identifying potential duplicate cancer cases across state boundaries has been a topic of interest for many years. Duplicate cases may distort our understanding of the burden of cancer in a state, region, or nationally, and waste cancer surveillance resources. We report a pilot quality improvement project to use a publicly available tool to encrypt a standard set of patient identifiers and then link cases across state boundaries to identify and reconcile possible duplicate cases among a group of neighboring states – Maine, New Hampshire, Rhode Island and Vermont. Encryption of identifiers allows states to identify duplicates without sharing protected health information for cases that may not belong to the other states. This approach can address complex issues around data release. Registries benefit by resolving duplicate reports including potential death clearance only (DCO) cases. We will describe the protocol, challenges, and preliminary results, and suggest future efforts. The protocol and SAS code freely available here.

Enhancing Cancer Registry Data for Comparative Effectiveness Research

09/01/10 - 09/30/13

NPCR funded selected central cancer registries to perform data collection, training, methodological development, and expansion of electronic reporting to support Comparative Effectiveness Research and develop sustainable methods to enhance cancer registry data for public health and research. We are pleased to announce that New Hampshire was selected as a specialized Comparative Effectiveness Research (CER) registry.

We would like to thank all reporting facilities for helping NHSCR in our selection as a specialized registry in CDC's Enhancing Cancer Registries for Comparative Effectiveness Research (CER) project. CER is a research approach to identify the best treatment protocols and strategies based on the recorded outcomes of patients, rather than by performing clinical trials.

As part of the CER reporting requirements, every facility is required to collect some new data items. Some items (eg comorbidities) are required for ALL cases. Others are only required for breast, colorectal, and chronic myeloid leukemia (CML) cases diagnosed from after January 1, 2011.

The additional data items specific to the CER project are not included in the standard NAACCR data dictionary or in FORDS. To assist registrars with data collection efforts, the NHSCR provides the following training material and references:

The NHSCR submitted a final dataset to CDC in January 2013. We believe your participation in the CER-funded project as a Specialized Cancer Registry will not only enhance both New Hampshire and national cancer surveillance and prevention activities, but will also strengthen your own facility's data collection capabilities.

Patient-Centered Outcomes

10/01/2013 – 06/30/2017

The CDC is further enhancing the 2011 CER data by collecting follow-up information for breast and colorectal cancers diagnosed in 2011 only as the Patient Center Outcomes (PCO project). The focus of this additional data collection is to assess recurrence and progression of cancer as well as the type of any additional treatment. This data will permit researchers to evaluate the effectiveness of treatment using intermediate outcomes (i.e. recurrence, progression) rather than mortality data only. Registries will also collect any first course treatment information that is identified, but had not been collected during the CER project.

The NHSCR is participating in this project, and staff has been visiting both registry and non-registry hospitals annually to obtain the data items specified in the PCO Data Dictionary. A full five years of follow-up data collection is planned. Again, there are many new data items specific to the PCO project that have not been previously collected by the NHSCR or other registry standard setters.

We would again like to thank all reporting facilities for their help and cooperation in allowing NHSCR staff access to the data needed to meet the requirements of the project.

Publications

Freeman MB, Pollack LA, Rees JR, Johnson CJ, Rycroft RK, Rousseau DL, Hsieh MC; enhancement of NPCR for comparative effectiveness research team. Capture and coding of industry and occupation measures: Findings from eight National Program of Cancer Registries states. Am J Ind Med. 2017 Aug;60(8):689-695. doi: 10.1002/ajim.22739.

Ingimarsson JP, Celaya MO, Laviolette M, Rees JR, Hyams ES. Trends in initial management of prostate cancer in New Hampshire. Cancer Causes Control. 2015 Apr 4. [Epub ahead of print]

Rees JR, Zens MS, Celaya MO, Riddle BL, Karagas MR, Peacock JL. Survival after squamous cell and basal cell carcinoma of the skin: A retrospective cohort analysis. Int J Cancer. 2015 Jan 16. doi: 10.1002/ijc.29436. [Epub ahead of print].

Chen VW, Eheman CR, Johnson CJ, Hernandez MN, Rousseau D, Styles TS, West DW, Hsieh M, Hakenewerth AM, Celaya MO, Rycroft RK, Wike JM, Pearson M, Brockhouse J, Mulvihill LG, Zhang KB. Enhancing Cancer Registry Data for Comparative Effectiveness Research (CER) Project: Overview and Methodology. J Registry Manag. 2014 Fall;41(3):103-12.

Rees JR, Zens MS, Gui J, Celaya MO, Riddle BL, Karagas MR. Non melanoma skin cancer and subsequent cancer risk. PLoS One. 2014 Jun 17;9(6):e99674.

Wyszynski A, Tanyos SA, Rees JR, Marsit CJ, Kelsey KT, Schned AR, Pendleton EM, Celaya MO, Zens MS, Karagas M, Andrew AS. Body mass and smoking are modifiable risk factors for recurrent bladder cancer. Cancer. 2014 Feb 1;120(3):408-14.

Celaya MO, Riddle BL, Cherala S, Armenti K, Rees JR. Reliability of rapid reporting of cancers in New Hampshire. J Registry Manag. 2010 Fall;37(3):107-111.

Armenti KR, Celaya MO, Cherala S, Riddle BL, Schumacher PK, Rees JR. Improving the quality of industry and occupation data at a central cancer registry. Am J of Ind Med. 2010 Oct;5(10):995-1001.

Celaya MO, Berke EM, Onega TL, Gui J, Riddle BL, Cherala SS, Rees JR. Breast cancer stage at diagnosis and geographic access to mammography screening (New Hampshire, 1998-2004). Rural Remote Health. 2010 Apr-Jun;10(2):1361. Epub 2010 Apr 23.

Johnson A, Rees JR, Schwenn M, Riddle B, Verrill C, Celaya MO, Nicolaides DA, Cherala S, Feinberg M, Gray A, Rutstein L, Katz MS, Nunnink JC. Oncology care in rural northern New England. J Oncol Pract. 2010 Mar;6(2):81-89.

Riddle BL. Event driven data set for cancer surveillance. J Registry Manag. 2006 Summer; 33(2):57-63.

Celaya MO, Rees JR, Gibson JJ, Riddle BL, Greenberg ER. Travel distance and season of diagnosis affect treatment choices for women with early-stage breast cancer in a predominantly rural population. Cancer Causes Control. 2006 Aug; 17(6): 851-6.

Riddle BL. For the patient. Collecting cancer information in New Hampshire. Ethn Dis. 2005 Spring;15(2):353.

Riddle BL. On the coding and reporting of race and ethnicity in New Hampshire for purposes of cancer reporting. Ethn Dis. 2005 Spring;15(2):324-331.

Riddle BL. A review of death clearance in central cancer registries and proposal for a new regime. Journal of Registry Management. Vol. 31 (2). Summer 2004: 67-73.

Oral Presentations

Celaya MO, Johnson A, Schwenn M, Rees JR (authors); and Riddle BL, Kachajian J, Schwenn M (presenters). Oncology care in rural Northern New England. North American Association of Central Cancer Registries 2010 Annual Meeting. Quebec City, Quebec, Canada; June 2010.

Johnson A, Rees JR, Schwenn M, Nunnink C. Oncology care in rural Northern New England. Northern New England Clinical Oncology Society Annual Meeting. Rockport, Maine; October 2009.

Johnson A, Riddle B, Schwenn M. Northern New England Collaboration: Clear as Mud. NPCR Directors' Meeting. Atlanta, GA; April 2009.

Riddle BL. "Electronic Medical Information and Its Impact on Registries." Cancer Registrars Association of New England Annual Meeting. Westboro, Massachusetts; November 2005.

Riddle BL. "An Events Driven Data Set for Cancer Surveillance." Rocky Mountain Cancer Data Systems Annual Meeting. Arlington, Virginia; September 2005.

Celaya Mo, Rees JR, Riddle BL. "Rapid Case Reporting in New Hampshire." North American Association of Central Cancer Registries 2005 Annual Meeting. Cambridge, MA; June 2005.

Riddle BL. "Patterns of Morphology Reporting," North American Association of Central Cancer Registries 2004 Annual Meeting. Salt Lake City, Utah; June 2004.

Riddle BL. "On the Coding and Reporting of Race and Ethnicity in New Hampshire." North American Association of Central Cancer Registries 2003 Annual Meeting. Honolulu, Hawaii; June 2003.

Riddle BL. "Using Out of the Box Software to Protect and Secure Registry Data." North American Association of Central Cancer Registries 2001 Annual Meeting. Miami Beach, Florida; June 2001.

Poster Presentations

Riddle BL, Rees JR, Celaya MO, Andrew AA, Zens MS. Understanding theories of cancer population cancer surveillance: genetic and ‘epi-genetic’ pathways to colorectal carcinogenesis. (1st Place Award) North American Association of Central Cancer Registries Annual Conference. St. Louis, MO; June 2016.

Celaya MO, Armenti K, Calvert G, Hosain GM, Rees JR. Industry and occupation data from registry and death certificates. North American Association of Central Cancer Registries Annual Conference. St. Louis, MO; June 2016.

Riddle BL, Rees JR, Celaya MO, Zens MS. Using NAACCR survival table to look at deaths. North American Association of Central Cancer Registries Annual Conference. St. Louis, MO; June 2016.

Ingimarsson JP, Laviolette M, Celaya MO, Rees JR, Hyams ES. Does distance from a radiation facility impact patient decision-making regarding treatment for prostate cancer? A study of the New Hampshire State Cancer Registry (NHSCR). North American Association of Central Cancer Registries Annual Conference. Charlotte, NC; June 2015.

Ayres CM, Celaya MO, Rees JR. Increasing Non-Hospital Cancer Reporting: The NH Experience. North American Association of Central Cancer Registries Annual Conference. Charlotte, NC; June 2015.

Riddle B, Fuld AD, Ernstoff MS, Andrew A, Celaya MO, Hosain GM, Rees JR, A New Model for Cancer Incidence Reporting, North American Association of Central Cancer Registries Annual Meeting, Ottawa, Canada; June 2014.

Ingimarsson JP, Laviolette M, Celaya MO, Rees JR, Hyams JR. Trends in initial management of prostate cancer in New Hampshire - Reasons for optimism? North American Association of Central Cancer Registries Annual Conference. Ottawa, Canada; June 2014.

Celaya MO, Gershman ST, Andrew AS, Riddle BL, Cherala S, Davis CE, Rees JR. Expanding cancer registry data collection for Comparative Effectiveness Research: Logistical issues. North American Association of Central Cancer Registries Annual Conference. Portland, Oregon; June 2012.

Riddle BL, Nyman S, Rees JR. Estimating the Costs of a Data Breach: An Exercise at the New Hampshire State Cancer Registry. 2011 National Program of Cancer Registries (NPCR) Program Director’s Meeting. Atlanta, Georgia; April 2011.

Riddle BL. Cancer and place of death in New Hampshire. North American Association of Central Cancer Registries 2010 Annual Meeting. Quebec City, Quebec, Canada; June 2010.

Riddle BL, Celaya MO. "Death Certificates and Estimates of Cancer Mortality". North American Association of Central Cancer Registries 2008 Annual Meeting. Denver, Colorado; June 2008.

Riddle BL. "Event Level Architecture for an Event Driven Data Set for Electronic Cancer Surveillance." North American Association of Central Cancer Registries 2007 Annual Meeting. Detroit, Michigan; June 2007.

Celaya MO, Rees J, Riddle BL, Armenti K, Cherala S. "Evaluation of Occupation and Industry in the NH State Cancer Registry." North American Association of Central Cancer Registries 2007 Annual Meeting. Detroit, Michigan; June 2007.

Celaya MO, Colby JP. "Radon Exposure Potential and Lung Cancer in New Hampshire." North American Association of Central Cancer Regisries 2006 Annual Meeting. Regina, Saskatchewan, Canada; June 2006.

Riddle B, Boeshaar DK. "Event Driven Data Set for Cancer Surveillance." North American Association of Central Cancer Registries 2005 Annual Meeting. Cambridge, Massachusetts; June 2005.

Celaya MO, Rees J, Riddle BL. "Assessing the Reliability of Rapid Case Reporting in a Central Cancer Registry." North American Association of Central Cancer Registries Annual 2004 Meeting. Salt Lake City, UT; June 2004.

Riddle B, Rees J. "Questions about Sensitivity and Specificity of NAACCR Hispanic Identification Algorithm in a State with Small Non-White Population." North American Association of Central Cancer Registries 2004 Annual Meeting. Salt Lake City, UT; June 2004.

Riddle B. "Using Windows XP to Secure Laptop Computers to Hold Confidential Information." North American Association of Central Cancer Registries 2002 Annual Meeting. Toronto, Ontario, Canada; June 2002.

Riddle B. "Looking at Central Sequence Number to Access the Reliability of a Central Registry Data Set." North American Association of Central Cancer Registries 2002 Annual Meeting. Toronto, Ontario, Canada; June 2002.