Literature DB >> 22386623

Two decades' experience with a prospective biobank for urologic oncology: research, clinical care, and the patients' view.

Johannes Huber1, Esther Herpel, Hildegard Jakobi, Boris A Hadaschik, Sascha Pahernik, Markus Hohenfellner.   

Abstract

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.
MATERIALS AND METHODS: Our prospective database comprises a total of 6,567 cases covering all types of urologic malignancies: prostate (40.7%), renal (30.5%), urothelial (21.8%), testicular (5.8%), penile (0.8%), and other (0.4%). A specialized full-time documentalist supported by 3 student assistants entered 38,135 aftercare visits characterized by approximately 100 partly disease-specific items. The Institute of Pathology's general collection contains more than 6 million paraffin-embedded samples, and since 2005 the interdisciplinary Tissue Bank at the National Center for Tumor Diseases in Heidelberg has collected about 21,000 cryo-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, from 09/07 through 02/08, none refused. Their additional questionnaire had a return rate of 81% (n = 128). Moral obligation for supporting medical research was realized by 95%, and circumstantial pressure to participate was not a relevant factor for 87%. Whereas only 68% were hoping for personal benefit, altruism seemed to be a much stronger motive: 96% believe others could be healed because of further medical progress; 93% wanted to be actively informed about recommended aftercare visits. Consequently, response rates in the "Heidelberg Cancer Maintenance Program" are constantly above 93%. Regarding research, a total of 144 scientific inquiries have been answered using our database since 1995. Within the last 5 years, 37 manuscripts originated from 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.
Copyright © 2013 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Biobank; Patient-reported outcome; Quality of care; Urologic oncology

Mesh:

Year:  2012        PMID: 22386623     DOI: 10.1016/j.urolonc.2012.01.016

Source DB:  PubMed          Journal:  Urol Oncol        ISSN: 1078-1439            Impact factor:   3.498


  17 in total

Review 1.  [Structure of biobanks for urological research].

Authors:  G Hatiboglu; J Huber; E Herpel; I V Popeneciu; J Nyarangi-Dix; D Teber; B A Hadaschik; S Pahernik; S Duensing; M Hohenfellner
Journal:  Urologe A       Date:  2015-09       Impact factor: 0.639

2.  Predictive factors for immediate continence after radical prostatectomy.

Authors:  G Hatiboglu; D Teber; D Tichy; S Pahernik; B Hadaschik; J Nyarangi-Dix; M Hohenfellner
Journal:  World J Urol       Date:  2015-05-20       Impact factor: 4.226

3.  "As Long as You Ask": A Qualitative Study of Biobanking Consent-Oncology Patients' and Health Care Professionals' Attitudes, Motivations, and Experiences-the B-PPAE Study.

Authors:  Sonia Yip; Jennifer Fleming; Heather L Shepherd; Adam Walczak; Jonathan Clark; Phyllis Butow
Journal:  Oncologist       Date:  2018-11-09

4.  Docetaxel followed by abiraterone in metastatic castration-resistant prostate cancer: efficacy and predictive parameters in a large single center cohort.

Authors:  Thomas Höfner; Sonia Vallet; Boris A Hadaschik; Sascha Pahernik; Stefan Duensing; Markus Hohenfellner; Dirk Jäger; Carsten Grüllich
Journal:  World J Urol       Date:  2014-08-12       Impact factor: 4.226

5.  Biobanking: The Melding of Research with Clinical Care.

Authors:  Maureen E Smith; Sharon Aufox
Journal:  Curr Genet Med Rep       Date:  2013-06

6.  [Recurrence-free survival after radical prostatectomy and PDE-5 inhibitor intake].

Authors:  L Hofer; J P Radtke; C Rapp; S Pahernik; D Teber; M Hohenfellner; B Hadaschik
Journal:  Urologe A       Date:  2017-04       Impact factor: 0.639

7.  Post-prostatectomy radiotherapy adversely affects urinary continence irrespective of radiotherapy regime.

Authors:  J N Nyarangi-Dix; J Steimer; T Bruckner; H Jakobi; S A Koerber; B Hadaschik; J Debus; M Hohenfellner
Journal:  World J Urol       Date:  2017-08-31       Impact factor: 4.226

8.  Differences in preferences for models of consent for biobanks between Black and White women.

Authors:  Katherine M Brown; Bettina F Drake; Sarah Gehlert; Leslie E Wolf; James DuBois; Joann Seo; Krista Woodward; Hannah Perkins; Melody S Goodman; Kimberly A Kaphingst
Journal:  J Community Genet       Date:  2015-08-25

9.  Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process.

Authors:  Bettina F Drake; Katherine M Brown; Sarah Gehlert; Leslie E Wolf; Joann Seo; Hannah Perkins; Melody S Goodman; Kimberly A Kaphingst
Journal:  J Cancer Educ       Date:  2017-12       Impact factor: 2.037

10.  The impact of type 2 diabetes on the outcome of localized renal cell carcinoma.

Authors:  Thomas Höfner; Martin Zeier; Gencay Hatiboglu; Christian Eisen; Gita Schönberg; Boris Hadaschik; Dogu Teber; Stefan Duensing; Andreas Trumpp; Markus Hohenfellner; Sascha Pahernik
Journal:  World J Urol       Date:  2013-12-27       Impact factor: 4.226

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