6 TWO DECADES' EXPERIENCE WITH A PROSPECTIVE BIOBANK FOR UROLOGIC ONCOLOGY: EFFECTS ON RESEARCH, CLINICAL CARE AND PATIENT SATISFACTION

Abstract

You have accessJournal of UrologyGeneral & Epidemiological Trends & Socioeconomics: Evidence-based Medicine & Outcomes I1 Apr 20106 TWO DECADES' EXPERIENCE WITH A PROSPECTIVE BIOBANK FOR UROLOGIC ONCOLOGY: EFFECTS ON RESEARCH, CLINICAL CARE AND PATIENT SATISFACTION Johannes Huber, Esther Herpel, Hildegard Jakobi, Nina Wagener, Boris Hadaschik, and Markus Hohenfellner Johannes HuberJohannes Huber More articles by this author , Esther HerpelEsther Herpel More articles by this author , Hildegard JakobiHildegard Jakobi More articles by this author , Nina WagenerNina Wagener More articles by this author , Boris HadaschikBoris Hadaschik More articles by this author , and Markus HohenfellnerMarkus Hohenfellner More articles by this author View All Author Informationhttps://doi.org/10.1016/j.juro.2010.02.049AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookTwitterLinked InEmail INTRODUCTION AND OBJECTIVES Collection of clinical data and associated tissue samples has become an essential tool for oncologic research. Since 1990 efforts have been ongoing to implement prospective documentation of all oncologic cases in our department accompanied by a special aftercare program ensuring regular visits and reliable data acquisition. METHODS We evaluated our prospective database and reviewed the number of collected tissue samples. To date, a total of 5,150 cases covering all types of urologic malignancies have been included: prostate (36%), renal (33.6%), urothelial (22.9%), testicular (6.3%), penile (0.7%), and other (0.5%). A total of 28,740 documented aftercare visits are characterized by approximately 100 partly disease-specific items. A specialized full-time documentalist supported by three student assistants maintains this database. Our general cancer tissue biobank contains more than 6,000,000 paraffin- and about 8,500 cryo-samples. Starting in 2005, urologic tissue blocks have been supplemented by blood and urine samples. Furthermore, we asked the opinion of 158 patients who attended our clinic for cancer surgery using a self-designed questionnaire. RESULTS Of 158 patients asked to be included in the biobank over a 6-month period none refused. Their additional questionnaire had a return rate of 81% (n=128). Moral obligation for supporting medical research was realized by 94.5%, and circumstantial pressure to participate was not a relevant factor for 87%. Whereas only 68.2% were hoping for personal benefit, altruism seemed to be a much stronger motive: 96.4% believe others could be healed due to further medical progress. 93.4% wanted to be actively informed about recommended aftercare visits. Consequentially, response rates in the “Heidelberg Cancer Maintenance Program” are constantly high above 95%. Regarding research, a total of 106 scientific enquiries have been answered using our database since 1995. Moreover, 14 manuscripts published since 2006 originated from our biobank data: Herein, molecular markers and risk factors have been correlated with clinical outcome. Additionally, TNM-validation studies were conducted. CONCLUSIONS Prospective collection of clinical data and corresponding tissue has become an indispensable research tool in oncology. In general, patients do not object tissue banking and embrace special aftercare programs. Relying on our experience an interdisciplinary biobank project was started in 2005 at the National Center for Tumor Diseases in Heidelberg. Heidelberg, Germany© 2010 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 183Issue 4SApril 2010Page: e3 Advertisement Copyright & Permissions© 2010 by American Urological Association Education and Research, Inc.MetricsAuthor Information Johannes Huber More articles by this author Esther Herpel More articles by this author Hildegard Jakobi More articles by this author Nina Wagener More articles by this author Boris Hadaschik More articles by this author Markus Hohenfellner More articles by this author Expand All Advertisement Advertisement PDF downloadLoading ...