Linkage of Molecular and Epidemiological Breast Cancer Investigations With Treatment Data: A Specialized Registry
Abstract
During the 60 months of this project, 23 member institutions of the Cancer and Leukemia Group B (CALGB) and their affiliates entered 347 breast cancer patients into the Linked Registry according to procedures specified in CALCB protocol 9484. Telephone interviews have been completed on 91.4% of eligible patients. Only 8.6% of patients refused the interview. The flow of samples from eligible patients has been satisfactory and there have been no problems with preparation of DNA, or with the handling of serum samples and tissue blocks. Patient accrual was about one tenth of that originally anticipated for this project. Corrective actions taken during the project improved accrual but it never was satisfactory. Changes in the way that the research and ethics communities view large-scale projects in which genomic DNA is collected and studied will be required before projects of this magnitude can succeed. Despite the smaller patient sample resulting from the project, the Registry will be used for selected proposals that meet the its review criteria. At the end of funding arrangements were made to archive the specimens and to preserve the questionnaire-derived data so as to serve investigators who will use the Registry in the future.
Document Details
- Document Type
- Technical Report
- Publication Date
- Oct 01, 1999
- Accession Number
- ADA382830
Entities
People
- O. R. Mcintyre
Organizations
- Dartmouth College