Participation among breast cancer patients in a prospective cancer registry and quality of specimens collected for a tissue repository: the Expanded Breast Cancer Registry and Tissue Repository (EBCR) experience.
Authors: Royce M , Meisner A , Wallace A , Berwick M , Mangalik A , Russell J 
Published: December 2010

Abstract
Abstract #3104
BACKGROUND: We describe herein our experience with the EBCR, an IRB approved protocol, which prospectively collects clinically annotated tissues from a cohort of New Mexican breast cancer patients. This resource provides high quality specimens and detailed epidemiologic/clinical data for correlative studies. Participants understand that the resource will be used for future undetermined research; thus they altruistically participate in hopes of helping others. All specimens are processed immediately after collection, increasing their availability for molecular- and immunological assays. Follow-up clinical data are documented with associated specimens allowing for inter- and intra-individual comparison.&#x2028; MATERIALS AND METHODS: Newly diagnosed breast cancer patients are approached for participation at our Breast Clinic. Eligiblity criteria are: non-metastatic breast cancer, within 12 months of definitive surgery, age &gt; 18 years. After obtaining consent, a breast cancer risk assessment is administered and buccal cells are collected. Blood for serum, plasma and DNA is collected at enrollment then 4-6 months for year 1 and annually thereafter. Tumor and normal breast tissue are collected at time of surgery, with a fine needle aspiration (FNA) performed and the cells stored in RNAlater. Quarterly, EBCR staff update each participant's clinical history.&#x2028; RESULTS: Since opening in February 2006, 224 patients have been enrolled, representing 86% participation among eligible patients approached. The average age is 52.7 years; 77% reside in the Albuquerque metro area. Self-reported racial/ethnic distribution among participants are: 51% non-Hispanic white, 35% Hispanic, 5% Native American, 3% African-American and 5% other. The distribution for those who declined participation (n=34) was: 35% non-Hispanic white, 38% Hispanic, 12% Native American, 9% African-American and 6% Asian. Typically, patients declining participation were those who appeared to be overwhelmed with their diagnosis or with treatment plans discussed at the same visit.&#x2028; We have collected blood and buccal cells from 88% and 98% of participants at enrollment, respectively. Serum and plasma was extracted from blood and frozen within an hour of draw. On average, the total DNA yield from blood and mouthwash was 138.7 ug/ml and 92.8 ug/ml, respectively. Starting at arterial clamp time, FNA's of breast tissue were collected within 5 minutes, and fresh breast tissue was flash frozen within 1 hour to decrease degradation of key metabolites and RNA.&#x2028; CONCLUSION: Participation among breast cancer patients in this prospective breast specific registry and tissue repository is robust, particularly among racial/ethnic minorities. From our experience, participation rates can be improved if the protocol is presented after patients had time to process their diagnosis and are not distracted by recently presented information. Specimens collected in the manner described provide premium specimens to conduct innovative and responsible research.
Citation Information: Cancer Res 2009;69(2 Suppl):Abstract nr 3104.