TY - JOUR AU - Brisson, a. R. AU - Matsui, D. AU - Rieder, M. J. AU - Fraser, D. D. PY - 2012 DA - 2012// TI - Translational research in pediatrics: tissue sampling and biobanking JO - Pediatrics VL - 129 UR - https://doi.org/10.1542/peds.2011-0134 DO - 10.1542/peds.2011-0134 ID - Brisson2012 ER - TY - JOUR AU - Colman, E. AU - Golden, J. AU - Roberts, M. AU - Egan, A. AU - Weaver, J. AU - Pharm, D. AU - Rosebraugh, C. PY - 2010 DA - 2010// TI - The path to personalized medicine JO - N Engl J Med VL - 363 ID - Colman2010 ER - TY - JOUR AU - Hirtzlin, I. AU - Dubreuil, C. AU - Préaubert, N. AU - Duchier, J. AU - Jansen, B. AU - Simon, J. AU - Lobato De Faria, P. AU - Perez-Lezaun, A. AU - Visser, B. AU - Williams, G. D. AU - Cambon-Thomsen, A. PY - 2003 DA - 2003// TI - An empirical survey on biobanking of human genetic material and data in six EU countries JO - Eur J Hum Genet VL - 11 UR - https://doi.org/10.1038/sj.ejhg.5201007 DO - 10.1038/sj.ejhg.5201007 ID - Hirtzlin2003 ER - TY - STD TI - Altekruse SF, Rosenfeld GE, Carrick DM, Pressman EJ, Schully SD, Mechanic LE, Cronin KA, Hernandez BY, Lynch CF, Cozen W, Khoury MJ, Penberthy LT. SEER cancer registry biospecimen research: yesterday and tomorrow. Cancer Epidemiol Biomarkers Prev. 2014;23(12):2681–7. ID - ref4 ER - TY - JOUR AU - Compton, C. PY - 2007 DA - 2007// TI - Getting to personalized cancer medicine: taking out the garbage JO - Cancer VL - 110 UR - https://doi.org/10.1002/cncr.22966 DO - 10.1002/cncr.22966 ID - Compton2007 ER - TY - JOUR AU - Végvári, A. AU - Welinder, C. AU - Lindberg, H. AU - Fehniger, T. E. AU - Marko-Varga, G. PY - 2011 DA - 2011// TI - Biobank resources for future patient care: developments, principles and concepts JO - J Clin Bioinf VL - 1 UR - https://doi.org/10.1186/2043-9113-1-24 DO - 10.1186/2043-9113-1-24 ID - Végvári2011 ER - TY - JOUR AU - Vaught, J. AU - Rogers, J. AU - Carolin, T. AU - Compton, C. PY - 2011 DA - 2011// TI - Biobankonomics: developing a sustainable business model approach for the formation of a human tissue biobank JO - J Natl Cancer Inst Monogr VL - 2011 UR - https://doi.org/10.1093/jncimonographs/lgr009 DO - 10.1093/jncimonographs/lgr009 ID - Vaught2011 ER - TY - JOUR AU - Kamm, L. AU - Bogdanov, D. AU - Laur, S. AU - Vilo, J. PY - 2013 DA - 2013// TI - A new way to protect privacy in large-scale genome-wide association studies JO - Bioinformatics VL - 29 UR - https://doi.org/10.1093/bioinformatics/btt066 DO - 10.1093/bioinformatics/btt066 ID - Kamm2013 ER - TY - JOUR AU - Wang, X. AU - Liu, L. AU - Fackenthal, J. AU - Cummings, S. AU - Olopade, O. I. AU - Hope, K. AU - Silverstein, J. C. AU - Olopade, O. I. PY - 2009 DA - 2009// TI - Translational integrity and continuity: personalized biomedical data integration JO - J Biomed Inform VL - 42 UR - https://doi.org/10.1016/j.jbi.2008.08.002 DO - 10.1016/j.jbi.2008.08.002 ID - Wang2009 ER - TY - JOUR AU - Wang, X. AU - Olopade, O. AU - Foster, I. PY - 2011 DA - 2011// TI - Personalized biomedical data integration JO - Pers Biomed Data Integr Biomed Eng Trends Electron Commun Software Mr Anthony Laskovski VL - 1 ID - Wang2011 ER - TY - STD TI - Dhir R, Patel AA, Winters S, Bisceglia M, Swanson D, Aamodt R, et al. A multidisciplinary approach to honest broker services for tissue banks and clinical data: A pragmatic and practical model. Cancer. 2008;113:1705–15. ID - ref11 ER - TY - STD TI - The Health Insurance Portability and Accountability Act of 1996 (HIPAA) P.L. No. 104-191, 110 Stat. 1938 (1996). ID - ref12 ER - TY - STD TI - The Office for Civil Rights (OCR), B. Malin. Guidance regarding methods for de-identification of protected Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule. Heal Inf Priv. 2012;1–32. http://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html. UR - http://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html ID - ref13 ER - TY - JOUR AU - Dhir, R. AU - Patel, A. a. AU - Winters, S. AU - Bisceglia, M. AU - Swanson, D. AU - Aamodt, R. AU - Becich, M. J. PY - 2008 DA - 2008// TI - A multidisciplinary approach to honest broker services for tissue banks and clinical data: a pragmatic and practical model JO - Cancer VL - 113 UR - https://doi.org/10.1002/cncr.23768 DO - 10.1002/cncr.23768 ID - Dhir2008 ER - TY - BOOK PY - 2010 DA - 2010// TI - NCI best practices for biospecimen resources ID - ref15 ER - TY - STD TI - Boyd AD, Saxman PR, Hunscher DA, Smith KA, Morris TD, Kaston M, Bayoff F, Rogers B, Hayes P, Rajeev N, Kline-Rogers E, Eagle K, Clauw D, Greden JF, Green LA, Athey BD. The University of Michigan Honest Broker: a Web-based service for clinical and translational research and practice. J Am Med Inform Assoc. 2009;16(6):784–91. doi:10.1197/jamia.M2985. ID - ref16 ER - TY - STD TI - The Children’s Brain Tumor Tissue Consortium. [Online]. Available: www.cbttc.org. Accessed 25 June 2015. UR - http://www.cbttc.org ID - ref17 ER - TY - JOUR AU - Collins, F. S. AU - Varmus, H. PY - 2015 DA - 2015// TI - A new initiative on precision medicine JO - N Engl J Med VL - 372 UR - https://doi.org/10.1056/NEJMp1500523 DO - 10.1056/NEJMp1500523 ID - Collins2015 ER - TY - JOUR AU - Rainie, L. AU - Fox, S. AU - Duggan, M. PY - 2014 DA - 2014// TI - The Web at 25 in the U.S JO - Pew Res Cent VL - 1 ID - Rainie2014 ER - TY - STD TI - S. Mukherjee. The emperor of all maladies: a biography of cancer. New York, NY: Scribner. 2011. ID - ref20 ER - TY - STD TI - June CH, Maus MV, Plesa G, Johnson L a, Zhao Y, Levine BL, Grupp A, Porter DL. Engineered T cells for cancer therapy. Cancer Immunol Immunother. 2014;63(9):969–75. ID - ref21 ER - TY - JOUR AU - Ostrom, Q. T. AU - Gittleman, H. AU - Chen, Y. AU - Wolinsky, Y. AU - Barnholtz-Sloan, J. PY - 2012 DA - 2012// TI - CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2005–2009 JO - Neuro Oncol VL - 14 UR - https://doi.org/10.1093/neuonc/nos218 DO - 10.1093/neuonc/nos218 ID - Ostrom2012 ER - TY - BOOK PY - 2014 DA - 2014// TI - Brain tumor information ID - ref23 ER - TY - STD TI - Cancer in Children & Adolescents. 2014. ID - ref24 ER - TY - JOUR AU - Baldwin, R. T. AU - Preston-Martin, S. PY - 2004 DA - 2004// TI - Epidemiology of brain tumors in childhood - a review JO - Toxicol Appl Pharmacol VL - 199 UR - https://doi.org/10.1016/j.taap.2003.12.029 DO - 10.1016/j.taap.2003.12.029 ID - Baldwin2004 ER - TY - JOUR AU - Boklan, J. J. PY - 2006 DA - 2006// TI - Little patients, losing patience: pediatric cancer drug development JO - Mol Cancer Ther VL - 5 UR - https://doi.org/10.1158/1535-7163.MCT-06-0179 DO - 10.1158/1535-7163.MCT-06-0179 ID - Boklan2006 ER - TY - STD TI - Brastianos PK, Taylor-Weiner A, Manley PE, Jones RT, Dias-Santagata D, Thorner AR, Lawrence MS, Rodriguez FJ, Bernardo LA, Schubert L, Sunkavalli A, Shillingford N, Calicchio ML, Lidov W, Taha H, Martinez-Lage M, Santi M, Storm PB, Lee JYK, Palmer JN, Adappa ND, Scott RM, Dunn IF, Laws ER, Stewart C, Ligon KL, Hoang MP , Van Hummelen P, Hahn WC, Louis DN, Resnick AC, Kieran MW, Getz G, Santagata S. Exome sequencing identifies BRAF mutations in papillary craniopharyngiomas. Nat Genet. 2014;46(2):161–5. ID - ref27 ER - TY - STD TI - Parsons DW, Li M, Zhang X, Jones S, Leary RJ, Lin JC-H, Boca SM, Carter H, Samayoa J, Bettegowda C, Gallia GL, Jallo Gl, Binder ZA, Nikolsky Y, Hartigan J, Smith DR, Gerhard DS, Fults DW, VandenBerg S, Berger MS, Marie SKN, Shinjo SMO, Clara C, Phillips PC, Minturn JE, Biegel JA, Judkins AR, Resnick AC, Storm PB, Curran T, He Y, Rasheed BA, Friedman HS, Keir ST, McLendon R, Northcott PA, Taylor MD, Burger PC, Riggins GJ, Karchin R, Parmigiani G, Bigner DD, Yan H, Papadopoulos N, Vogelstein B, Kinzler KW, Velculescu VE. The genetic landscape of the childhood cancer medulloblastoma. Science. 2011;331:435–9. ID - ref28 ER - TY - STD TI - Chin L, Hahn WC, Getz G, Meyerson M. Making sense of cancer genomic data. Genes & Development. 2011;25:534–555. ID - ref29 ER - TY - JOUR AU - Harris, P. a. AU - Taylor, R. AU - Thielke, R. AU - Payne, J. AU - Gonzalez, N. AU - Conde, J. G. PY - 2009 DA - 2009// TI - Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support JO - J Biomed Inform VL - 42 UR - https://doi.org/10.1016/j.jbi.2008.08.010 DO - 10.1016/j.jbi.2008.08.010 ID - Harris2009 ER - TY - JOUR AU - Chen, P. P. -. S. PY - 1976 DA - 1976// TI - The entity-relationship model---toward a unified view of data JO - ACM Trans Database Syst VL - 1 UR - https://doi.org/10.1145/320434.320440 DO - 10.1145/320434.320440 ID - Chen1976 ER - TY - JOUR AU - Pennington, J. W. AU - Ruth, B. AU - Italia, M. J. AU - Miller, J. AU - Wrazien, S. AU - Loutrel, J. G. AU - Crenshaw, E. B. AU - White, P. S. PY - 2013 DA - 2013// TI - Harvest: an open platform for developing web-based biomedical data discovery and reporting applications JO - J Am Med Inform Assoc VL - 21 UR - https://doi.org/10.1136/amiajnl-2013-001825 DO - 10.1136/amiajnl-2013-001825 ID - Pennington2013 ER - TY - JOUR AU - Cerami, E. AU - Gao, J. AU - Dogrusoz, U. AU - Gross, B. E. AU - Sumer, S. O. AU - Aksoy, B. A. AU - Jacobsen, A. AU - Byrne, C. J. AU - Heuer, M. L. AU - Larsson, E. AU - Antipin, Y. AU - Reva, B. AU - Goldberg, A. P. AU - Sander, C. AU - Schultz, N. PY - 2012 DA - 2012// TI - The cBio Cancer Genomics Portal: an open platform for exploring multidimensional cancer genomics data JO - Cancer Discov VL - 2 UR - https://doi.org/10.1158/2159-8290.CD-12-0095 DO - 10.1158/2159-8290.CD-12-0095 ID - Cerami2012 ER - TY - JOUR AU - Tomczak, K. AU - Czerwińska, P. AU - Wiznerowicz, M. PY - 2015 DA - 2015// TI - The Cancer Genome Atlas (TCGA): an immeasurable source of knowledge JO - Contemp Oncol (Poznań, Poland) VL - 19 ID - Tomczak2015 ER - TY - BOOK AU - Alkhatib, H. AU - Faraboschi, P. AU - Frachtenberg, E. AU - Kasahara, H. AU - Lange, D. AU - Laplante, P. AU - Merchant, A. AU - Burgess, A. PY - 2014 DA - 2014// TI - IEEE CS 2022 Report ID - Alkhatib2014 ER - TY - JOUR AU - Goble, C. AU - Stevens, R. PY - 2008 DA - 2008// TI - State of the nation in data integration for bioinformatics JO - J Biomed Inform VL - 41 UR - https://doi.org/10.1016/j.jbi.2008.01.008 DO - 10.1016/j.jbi.2008.01.008 ID - Goble2008 ER - TY - JOUR AU - Goble, C. AU - Stevens, R. AU - Hull, D. AU - Wolstencroft, K. AU - Lopez, R. PY - 2008 DA - 2008// TI - Data curation + process curation=data integration + science JO - Brief Bioinform VL - 9 UR - https://doi.org/10.1093/bib/bbn034 DO - 10.1093/bib/bbn034 ID - Goble2008 ER - TY - STD TI - Boyd AD, Hosner C, Hunscher D a, Athey BD, Clauw DJ, Green LA. An ‘Honest Broker’ mechanism to maintain privacy for patient care and academic medical research. Int J Med Inform. 2006;76(5–6):407–11. ID - ref38 ER - TY - STD TI - McConnell P, Dash RC, Chilukuri R, Pietrobon R, Johnson K, Annechiarico R, Cuticchia AJ. The cancer translational research informatics platform. BMC Med Inform Decis Mak. 2008;8:60. ID - ref39 ER - TY - STD TI - Kho AN, Cashy JP, Jackson KL, Pah AR, Goel S, Rn Boehnke J, Humphries JE, Kominers SD, Hota BN, Sims SA, Malin BA, French DD, Walunas TL, Meltzer DO, Kaleba EO, Jones RC, Galanter WL. Design and implementation of a privacy preserving electronic health record linkage tool in Chicago. J Am Med Inform Assoc. 2015;22(5):1072–1080. doi:10.1093/jamia/ocv038. ID - ref40 ER - TY - JOUR AU - Manion, F. J. AU - Robbins, R. J. AU - Weems, W. a. AU - Crowley, R. S. PY - 2009 DA - 2009// TI - Security and privacy requirements for a multi-institutional cancer research data grid: an interview-based study JO - BMC Med Inform Decis Mak VL - 9 UR - https://doi.org/10.1186/1472-6947-9-31 DO - 10.1186/1472-6947-9-31 ID - Manion2009 ER - TY - BOOK AU - Hutton, J. J. PY - 2012 DA - 2012// TI - Pediatric biomedical informatics PB - Springer Netherlands CY - Dordrecht ID - Hutton2012 ER - TY - STD TI - Boyd AD, Hunscher DA, Kramer AJ, Hosner C, Saxman P, Athey BD, Greden JF, Clauw DC. The ‘Honest Broker’ method of integrating interdisciplinary research data. AMIA Annu Symp Proc. 2005;902. ID - ref43 ER - TY - JOUR AU - Blobel, B. AU - Nordberg, R. AU - Davis, J. M. AU - Pharow, P. PY - 2006 DA - 2006// TI - Modelling privilege management and access control JO - Int J Med Inform VL - 75 UR - https://doi.org/10.1016/j.ijmedinf.2005.08.010 DO - 10.1016/j.ijmedinf.2005.08.010 ID - Blobel2006 ER - TY - BOOK PY - 2013 DA - 2013// TI - ECMA-404: The JSON data interchange format ID - ref45 ER - TY - JOUR AU - Morris, R. AU - Thompson, K. PY - 1979 DA - 1979// TI - Password security: a case history JO - Commun ACM VL - 22 UR - https://doi.org/10.1145/359168.359172 DO - 10.1145/359168.359172 ID - Morris1979 ER - TY - JOUR AU - Warner, J. L. AU - Maddux, S. E. AU - Hughes, K. S. AU - Krauss, J. C. AU - Yu, P. P. AU - Shulman, L. N. AU - Mayer, D. K. AU - Hogarth, M. AU - Shafarman, M. AU - Fiscalini, A. S. AU - Esserman, L. AU - Alschuler, L. AU - Koromia, G. A. AU - Gonzaga, Z. AU - Ambinder, E. P. PY - 2015 DA - 2015// TI - Development, implementation, and initial evaluation of a foundational open interoperability standard for oncology treatment planning and summarization JO - J Am Med Informatics Assoc VL - 22 ID - Warner2015 ER -