Overall Summary: Cancer Cases and Validation
Overall Summary: Cancer Cases and Validation
General information about cancer cases reported to the Sister Study and report validation can be accessed through the links below.
All Cancer Cases Summary
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For information on number and distribution by timing (baseline, unknown, or incident) of cancers reported to the Sister Study, please click on the Summary Table of All Cancers below. ICD10 codes used for each primary site can be found here.
Summary Table of All Cancers by Primary Site of Origin: Data Release 11
Summary Table of All Cancers by Primary Site of Origin: Data Release 10
Information on previous data releases can be found in the Archive.
All Cancer Cases Validation
Self-reports are the initial source of information on cancer in the Sister Study. Cancers may also be reported by next-of-kin (NOK) or identified through linkage to the National Death Index (NDI Plus). Participants who are diagnosed with cancer (or their NOK) report their diagnosis via regularly scheduled follow-ups (Annual Health Updates or Detailed Follow-Up Questionnaires); some may also report outside of scheduled follow-up activities by contacting staff via the Sister Study Helpdesk. Participants who report a cancer diagnosis (except non-melanoma skin cancer) are asked to share a personal copy of their pathology report, if available.
Approximately six months after the reported date of diagnosis, participants are asked to sign an authorization form permitting study personnel to contact their health care provider for copies of diagnostic pathology reports or other confirmatory information (cancers other than breast) or more complete medical records (breast cancer). This medical documentation is abstracted (Breast Cancer Medical Report Form, and when applicable, Stage IV Breast Cancer Medical Report Form; Other Cancer Medical Report Form) for verification of self-reported diagnoses and used in analysis of specific subtypes. Information collected includes tumor characteristics (e.g., histology and grade), lymph node involvement, and metastasis, and stage at diagnosis characteristics. Treatment information is only abstracted from complete medical records for breast cancer. For a list of the types of medical documentation requested for all validated conditions, see here.
For a summary of the concordance of self-reported and medical record-abstracted diagnoses for all incident cancers, please click on links below.
Concordance of Incident Self-Reported Cancer Diagnoses and Medical Records: Data Release 11
Concordance of Incident Self-Reported Cancer Diagnoses and Medical Records: Data Release 10
Concordance of Incident Self-Reported Cancer Diagnoses and Medical Records: Data Release 9
More information on the concordance of self-reported and medically abstracted breast cancer characteristics can be found here.
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