At the time of consent, each participant (patient or non-patient/control) is asked to complete a self-administered epidemiological questionnaire and return it via mail. The questionnaire contains over 1,100 items covering:
- Demographics and background
- Personal and family history of cancer
- Medical and cancer screening histories
- Women’s and men’s health issues
- Lifestyle (smoking, diet, physical activity, alcohol)
- Supplement and medication use
The questionnaire data dictionary and codebooks are available to investigators for research planning and analysis.
The Data Bank and BioRepository (DBBR) maintains data handling procedures to maximize data integrity and quality, and to sustain a minimum of a 75 percent response rate for the questionnaire:
- Questionnaires are scannable, minimizing the potential for data entry errors
- Customized software is used for error checking
- Five-point follow up schedule used for missing surveys
- Participants are re-contacted for inconsistencies
Each sample that is collected from patients is annotated relative to the sample collection date, including:
- Diagnosis status (new, benign, follow up, recurrent), sample treatment status (pre-surgical, post-adjuvant therapy, etc.), personal history status (no prior history, prior history of same cancer, prior history of other cancer, prior history of multiple cancers) and personal history detail.
- Diagnosis date, laterality, histology, behavior, grade, tumor size, clinical and pathological stage, distant sites, tumor markers, surgery date, and recurrence (as of the sample collection date). Linked to Roswell Park Cancer Registry.
- Can also capture or link to extended clinical data including comorbidities, extended treatment history and medications at the time of sample collection, upon request.
All data (and samples) are provided to investigators de-identified only. Participant names and other protected health information are never distributed to scientists.