On using a cancer center cancer registry to identify newly affected women eligible for hereditary breast cancer syndrome testing: Practical considerations

Journal of Genetic Counseling

Volumn 15, Issue 2, 2006, Pages 129-136

  DeMarco, Tiffani A ^a   Loffredo, Christopher A ^a,b   Sampilo, Marilyn L ^a   Tercyak, Kenneth P ^a,b  

^a GEORGETOWN UNIVERSITY   (United States)

^b GEORGETOWN UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

Case ascertainment; Genetic counseling; Hereditary breast cancer

Indexed keywords

ADULT; ARTICLE; BREAST CANCER; CANCER CENTER; CANCER REGISTRY; CANCER SCREENING; CLINICAL RESEARCH; CONTROLLED STUDY; DEMOGRAPHY; FAMILIAL CANCER; FEMALE; FISHER EXACT TEST; GENETIC ANALYSIS; GENETIC COUNSELING; GENETICS; HEALTH PROGRAM; HUMAN; MAJOR CLINICAL STUDY; POSTAL MAIL; RACE; SCORING SYSTEM; TELEPHONE;

ADULT; BREAST NEOPLASMS; ELIGIBILITY DETERMINATION; FEMALE; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; HUMANS; MASS SCREENING; REGISTRIES;

EID: 33745036130     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-005-9006-3     Document Type: Article

References (22)

1. Affleck, P. (2005). The challenge of recruitment. Nurs Res, 13(1), 78-84.
2. American Society of Clinical Oncology. (2003). American Society of Clinical Oncology policy statement update: Genetic testing for cancer susceptibility. J Clin Oncol, 21(12), 2397-2406.
3. Andersen, M. R., Schroeder, T., Gaul, M., Moinpour, C., & Urban, N. (2005). Using a population-based cancer registry for recruitment of newly diagnosed patients with ovarian cancer. Am J Clin Oncol, 28(1), 17-20.
4. Beskow, L. M., Botkin, J. R., Daly, M., Juengst, E. T., Lehmann, L. S., Merz, J. F., et al. (2004). Ethical issues in identifying and recruiting participants for familial genetic research. Am J Med Genet A, 130(4), 424-431.
5. Birkmeyer, N. J., Goodney, P. P., Stukel, T. A., Hillner, B. E., & Birkmeyer, J. D. (2005). Do cancer centers designated by the National Cancer Institute have better surgical outcomes? Cancer, 103(3), 435-441.
6. Brandt, R., Hartmann, E., Ali, Z., Tucci, R., & Gilman, P. (2002). Motivations and concerns of women considering genetic testing for breast cancer: A comparison between affected and atrisk probands. Genet Test, 6(3), 203-205.
7. Couch, F. J., DeShano, M. L., Blackwood, M. A., Calzone, K., Stopfer, J., Campeau, L., et al. (1997). BRCA1 mutations in women attending clinics that evaluate the risk of breast cancer. N Engl J Med, 336(20), 1409-1415.
8. Daly, P. A. (2004). Hereditary cancer: Guidelines in clinical practice - general overview. Ann Oncol, 15(Suppl. 4), iv121-iv125.
9. Frank, T. S., Manley, S. A., Olopade, O. I., Cummings, S., Garber, J. E., Bernhardt, B., et al. (1998). Sequence analysis of BRCA1 and BRCA2: Correlation of mutations with family history and ovarian cancer risk. J Clin Oncol, 16(7), 2417-2425.
10. Frost, C. J., Venne, V., Cunningham, D., & Gerritsen-McKane, R. (2004). Decision making with uncertain information: Learning from women in a high risk breast cancer clinic. J Genet Couns, 13(3), 221-236.
11. Garber, J. E., & Offit, K. (2005). Hereditary cancer predisposition syndromes. J Clin Oncol, 23(2), 276-292.
12. Gasson, J. C. (2005). Why cancer centers matter. Cancer Biol Ther, 4(4), 493-495.
13. Hemminki, K., & Eng, C. (2004). Clinical genetic counselling for familial cancers requires reliable data on familial cancer risks and general action plans. J Med Genet, 41(11), 801-807.
14. Hughes, C., Peterson, S. K., Ramirez, A., Gallion, K. J., McDonald, P. G., Skinner, C. S., et al. (2004). Minority recruitment in hereditary breast cancer research. Cancer Epidemiol, Biomarkers Prev, 13(7), 1146-1155.
15. John, E. M., Hopper, J. L., Beck, J. C., Knight, J. A., Neuhausen, S. L., Senie, R. T., et al. (2004). The Breast Cancer Family Registry: An infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer. Breast Cancer Res, 6(4), R375-R389.
16. Kagan, A. R., & Steckel, R. J. (2001). The American Cancer Center. Am J Clin Oncol, 24(2), 209-210.
17. Parmigiani, G., Berry, D., & Aguilar, O. (1998). Determining carrier probabilities for breast cancer-susceptibility genes BRCA1 and BRCA2. Am J Hum Genet, 62(1), 145-158.
18. Robson, M., Dabney, M. K., Rosenthal, G., Ludwig, S., Seltzer, M. H., Gilewski, T., et al. (1997). Prevalence of recurring BRCA mutations among Ashkenazi Jewish women with breast cancer. Genet Test, 1(1), 47-51.
19. Schwartz, M. D., Lerman, C., Brogan, B., Peshkin, B. N., Isaacs, C., DeMarco, T., et al. (2005). Utilization of BRCA1/BRCA2 mutation testing in newly diagnosed breast cancer patients. Cancer Epidemiol Biomarkers Prev, 14(4), 1003-1007.
20. Steckel, R. J. (1985). The NCI's Cancer Centers Program: Past, present, and future. Med Pediatr Oncol, 13(2), 59-64.
21. Sugarman, J., Regan, K., Parker, B., Bluman, L. G., & Schildkraut, J. (1999). Ethical ramifications of alternative means of recruiting research participants from cancer registries. Cancer, 86(4), 647-651.
22. Underwood, S. M. (2000). Minorities, women, and clinical cancer research: The charge, promise, and challenge. Ann Epidemiol, 10(8, Suppl.), S3-S12.