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Building population data bases: lessons from a community project.

P C Albertsen1, J Fine

  • 1University of Connecticut Health Center, Farmington 06030.

Clinical Performance and Quality Health Care
|September 5, 1993
PubMed
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This study built a community-based prostate cancer registry to track patient outcomes and quality of life. The database collects detailed data to assess treatment risks and benefits for localized prostate cancer.

Area of Science:

  • Oncology
  • Urology
  • Public Health

Background:

  • Observational databases offer an alternative to randomized clinical trials for long-term patient outcome assessment.
  • Community-based research facilitates the collection of real-world data on treatment effectiveness.

Purpose of the Study:

  • To describe the establishment and initial experience of a community-based observational database for localized prostate cancer.
  • To quantify risks and benefits of different treatment options for localized prostate cancer.

Main Methods:

  • A collaborative effort involving 38 urologists, radiation therapists, oncologists, and pathologists across five hospitals.
  • A rapid case ascertainment system using weekly pathology report review.
  • Structured interviews with patients diagnosed with localized prostate cancer.

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Main Results:

  • The database includes demographic data, comorbidities, and quality of life metrics (bowel, bladder, sexual function) pre- and post-intervention.
  • Initial data from 581 biopsy reports show 202 cases of localized prostate cancer.
  • Prostate biopsies are primarily performed on men aged 59-77, with a broader range of 45-93 years.

Conclusions:

  • Community-based observational databases are feasible for collecting comprehensive patient data in prostate cancer research.
  • This database provides a valuable resource for understanding treatment outcomes and quality of life in localized prostate cancer.