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Letter Template to State Cancer Registries

Re: Committee on Analysis of Cancer Risks in Populations Near Nuclear Facilities: Request for information on cancer incidence and mortality data availability and release

Dear Director:

I am writing to request information on your state’s cancer incidence and mortality data availability and the release of criteria of those data. Information about the accessibility of data will be used in support of a study being carried out by the National Academy of Sciences (NAS) Committee on Analysis of Cancer Risks in Populations near Nuclear Facilities, at the request of the U.S. Nuclear Regulatory Commission. The Statement of Task related to the study is attached.

I would appreciate information on the following issues:

  • Year from which complete cancer incidence and cancer mortality data for your State are available.
  • Year from which registry records include address.
  • Year from which census tract of reported cases is available.
  • Year from which the data are available electronically.
  • Assessments of the quality of the incidence and mortality data over time (i.e. completeness of ascertainment of cancer cases, completeness and accuracy of data variables requested).
  • The registry’s efforts to retrieve missing or incomplete information (e.g. missing age, or details about the site of cancer).
  • Whether there is active follow-up of reported cancer cases through


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K Letter Template to State Cancer Registries Re: Committee on Analysis of Cancer Risks in Populations Near Nuclear Facilities: Request for information on cancer incidence and mortality data availability and release Dear Director: I am writing to request information on your state’s cancer incidence and mortality data availability and the release of criteria of those data. In- formation about the accessibility of data will be used in support of a study being carried out by the National Academy of Sciences (NAS) Committee on Analysis of Cancer Risks in Populations near Nuclear Facilities, at the request of the U.S. Nuclear Regulatory Commission. The Statement of Task related to the study is attached. I would appreciate information on the following issues: • Year from which complete cancer incidence and cancer mortality data for your State are available. • Year from which registry records include address. • Year from which census tract of reported cases is available. • Year from which the data are available electronically. • Assessments of the quality of the incidence and mortality data over time (i.e. completeness of ascertainment of cancer cases, complete- ness and accuracy of data variables requested). • The registry’s efforts to retrieve missing or incomplete information (e.g. missing age, or details about the site of cancer). • Whether there is active follow-up of reported cancer cases through 395

OCR for page 395
396 APPENDIX K surveillance programs or other means to ascertain survival, length of follow-up (e.g., 5 years, lifetime), and completeness of follow-up. • Whether there is passive follow-up of reported cancer cases through linkage of cancer registry reports with death records to update vital status, and completeness. • Whether year and place of birth of diseased/deceased individuals are available • Procedures for request and release of cancer incidence and cancer mortality data at the address and census tract level, including as- sociated costs and estimated time frames. • References to any publications about registry operations or findings. • Any other information you think might be relevant to a national study of cancer incidence and mortality among persons living near nuclear facilities. I have also addressed the request for cancer mortality data information to [Name] from the Office of Vital Statistics. However, I understand that cancer registries can often facilitate access to the mortality data; therefore I hope that you will be able to provide me with the requested information. Any information you provide to me by November 15, 2011 will be considered in support of the study. Please note that all written information that you provide will be included in the Public Access File for this study. If you have questions about this request or would prefer to respond by telephone I would be happy to contact you. I can be reached by email (kcrowley@nas.edu) or telephone (202-334-3066). Sincerely, Kevin Crowley Study Director