Driving innovation through collaboration: development of clinical annotation datasets for brain cancer biobanking

Craig Gedye; Mythily Sachchithananthan; Robyn Leonard; Rosalind L Jeffree; Michael E Buckland; David S Ziegler; Manuel B Graeber; Bryan W Day; Kerrie L McDonald; Arian Lasocki; BCBA Consortium; Anna K Nowak

doi:10.1093/nop/npz036

Driving innovation through collaboration: development of clinical annotation datasets for brain cancer biobanking

Neurooncol Pract. 2020 Jan;7(1):31-37. doi: 10.1093/nop/npz036. Epub 2019 Aug 27.

Authors

Craig Gedye^{1

2

3

4}, Mythily Sachchithananthan¹, Robyn Leonard¹, Rosalind L Jeffree^{1

5}, Michael E Buckland^{1

6

7}, David S Ziegler^{1

8

9

10}, Manuel B Graeber^{1

11}, Bryan W Day^{1

12}, Kerrie L McDonald^{1

13

14}, Arian Lasocki^{1

15

16}; BCBA Consortium; Anna K Nowak^{1

17

18}

Collaborators

BCBA Consortium:
Michael Back, Michael Besser, Andrew Boyd, Michael Buckland, Jennifer Byrne, Lawrence Cher, Raymond Cook, Bryan Day, Jerry Day, Andrew Davidson, Lisa Devereux, Mark Dexter, Roy Donnelly, Kate Drummond, Lisa Eckstein, Hui Gan, Therese Garrick, Craig Gedye, Nick Gottardo, Manuel Graeber, Clive Harper, Rosalind Jeffree, Terrance Johns, Mustafa Khasraw, Ganessan Kichenadasse, Koh Eng-Siew, Wendy Lipworth, Robyn Leonard, Louise Ludlow, Kerrie McDonald, Andrew Moore, Lenka Munoz, Najmun Nahar, Anna Nowak, Sarah Olson, Rebecca Ormsby, Jonathon Parkinson, Audrey Partanen, Emma Raymond, Roger Reddel, Peter Robbins, Mark Rosenthal, Jodi Saunus, Brindha Shivalingam, John Simes, Brett Stringer, Heather Thorne, Claire Vajdic, Winny Varikatt, David Walker, Helen Wheeler, Deborah White, Sonia Yip, David Ziegler

Affiliations

¹ Brain Cancer Biobanking Australia, National Health and Medical Research Council Clinical Trials Centre, The University of Sydney, NSW, Australia.
² Clinical Research Director, NSW Health Statewide Biobank, Camperdown NSW.
³ School of Medicine and Public Health, University of Newcastle, Callaghan, NSW, Australia.
⁴ Calvary Mater Newcastle, Waratah, NSW, Australia.
⁵ Royal Brisbane and Women's Hospital, University of Queensland, Australia.
⁶ Department of Neuropathology, Royal Prince Alfred Hospital, Camperdown, NSW, Australia.
⁷ Discipline of Pathology, Brain & Mind Centre, University of Sydney, NSW, Australia.
⁸ Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.
⁹ School of Women's and Children's Health, University of New South Wales, Sydney, Australia.
¹⁰ Children's Cancer Institute, University of New South Wales, Sydney, Australia.
¹¹ Brain Tumor Research Laboratories, Brain and Mind Centre, The University of Sydney, NSW, Australia.
¹² QIMR Berghofer Medical Research Institute, Herston, QLD, Australia.
¹³ Cure Brain Cancer Neuro-oncology Laboratory, Prince of Wales Clinical School, University of New South Wales, Sydney, Australia.
¹⁴ Prince of Wales Clinical School, University of New South Wales, Sydney, Australia.
¹⁵ Department of Cancer Imaging, Peter MacCallum Cancer Centre, Melbourne, Victoria.
¹⁶ Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, Victoria, Australia.
¹⁷ School of Medicine and Pharmacology, University of Western Australia, Crawley.
¹⁸ Department of Medical Oncology, Sir Charles Gairdner Hospital, Nedlands, Australia.

Abstract

Background: A key component of cancer research is the availability of clinical samples with appropriately annotated clinical data. Biobanks facilitate research by collecting/storing various types of clinical samples for research. Brain Cancer Biobanking Australia (BCBA) was established to facilitate the networking of brain cancer biobanking operations Australia-wide. Maximizing biospecimen utility in a networked biobanking environment requires the standardization of procedures and data across different sites. The aim of this research was to scope and develop a recommended clinical annotation dataset both for pediatric and adult brain cancer biobanks.

Methods: A multidisciplinary working group consisting of members from the BCBA Consortium was established to develop clinical dataset recommendations for brain cancer biobanks. A literature search was undertaken to identify any published clinical dataset recommendations for brain cancer biobanks. An audit of data items collected and stored by BCBA member biobanks was also conducted to survey current clinical data collection practices across the BCBA network.

Results: BCBA has developed a clinical annotation dataset recommendation for pediatric and adult brain cancer biobanks. The clinical dataset recommendation has 5 clinical data categories: demographic, clinical and radiological diagnosis and surgery, neuropathological diagnosis, patient treatment, and patient follow-up. The data fields have been categorized into 1 of 3 tiers; essential, preferred, and comprehensive. This enables biobanks and researchers to prioritize appropriately where resources are limited.

Conclusion: This dataset can be used to guide the integration of data from multiple existing biobanks for research studies and for planning prospective brain cancer biobanking activities.

Keywords: biobanking; brain cancer; clinical annotation; datasets; neuro-oncology.

© The Author(s) 2019. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.