Registries and biobanks

Clinical registries and biobanks improve the quality and scope of health and medical research that can be undertaken, nationally and internationally. They are central to the discovery of new prevention strategies and treatments for diseases. They also enable us to assess and improve those already in place.

We are committed to contributing to these important knowledge centres. We work closely with clinicians and the agencies that coordinate clinical registries and biobanks to ensure high participation rates.

Biobanks are collections of human biological specimens (biospecimens) that include blood, urine, sputum and biopsies of human tissue that are either left over after diagnostic purposes or are taken specifically for research.

These biospecimens are used in medical research to better understand the causes and effects of disease on the body, with the purpose of finding improved ways to prevent and treat human disease.

Biobanks follow the guidelines set out by the National Health and Medical Research Council and must be governed in accordance with the expectations of the donors and the community. All research must undergo ethical review.

In collaboration with external partners, our clinicians currently contribute to the following biobanks:
  • WA Colorectal Research Group
  • WA Gynaecological Oncology Biospecimen Bank
  • The Australian Breast Cancer Biobank

Clinical registries support the collection of long term patient outcome data for particular diseases and/or surgeries. Their comprehensive data capture delivers valuable information to medical professionals, helping us to monitor health outcomes and undertake research.


Hospitals and health institutes from across the country are increasingly contributing data to national clinical registries, ensuring their scope and relevance continues to grow.


We participate in clinical registries to benefit our clinical practices and to improve the quality and accountability of health care in Australia.


In collaboration with external partners, our clinicians contribute to the following clinical registries:

Nicol D, Bubela T, Chalmers D, Charbonneau J, Critchley C, Dickinson J, Fleming J, Hewitt AW, Kaye J, Liddicoat J, McWhirter R, Otlowski M, Ries NM, Skene L, Stewart C, Wagner J and Zeps N. Precision Medicine: Drowning in a regulatory Soup? May 2016 Journal of Law and the Biosciences, 1–23

Joly Y, So D, Osien G, Crimi L, Bobrow M, Chalmers D, Wallace SE, Zeps N, Knoppers B. A decision tool to guide the ethics review of a challenging breed of emerging genomic projects. Eur J Hum Genet. 2016 Jan 20. doi: 10.1038/ejhg.2015.279. [Epub ahead of print] Review. PMID: 26785834

Williams AM, Allen J, Zeps N, Pienaar C, Bulsara C, Monterosso L. Consent to Donate Surgical Biospecimens for Research: Perceptions of People With Colorectal Cancer. Cancer Nurs. 2015 Jun 3. [Epub ahead of print] PMID: 26050142
Zeps N, Bledsoe MJ. Managing the Ethical Issues of Genomic Research using Pathology Specimens. Clin Biochem Rev. 2015 Feb;36(1):21-7. PMID: 25944969 Free PMC Article

Chalmers D, Nicol D, Nicolás P, Zeps N A Role for Research Ethics Committees in Exchanges of Human Biospecimens Through Material Transfer Agreements. J Bioeth Inq. 2014 Jun 26. [Epub ahead of print].
Amber L Johns, David K Miller, Skye H Simpson, Anthony J Gill, Karin S Kassahn, Jeremy L Humphris, Jaswinder S Samra, Katherine Tucker, Lesley Andrews, David K Chang, Nicola Waddell, Marina Pajic, Australian Pancreatic Cancer Genome Initiative, John V Pearson, Sean M Grimmond, Andrew V Biankin, Nikolajs Zeps Returning individual research results for genome sequences of pancreatic cancer. Genome Medicine 2014, 6:42 (29 May 2014).
Milius D, Dove ES, Chalmers D, Dyke SO, Kato K, Nicolás P, Ouellette BF, Ozenberger B, Rodriguez LL, Zeps N, Joly Y. The International Cancer Genome Consortium's evolving data-protection policies. Nat Biotechnol. 2014 Jun 9;32(6):519-23.

Watson PH, Nussbeck SY, Carter C, O'Donoghue S, Cheah S, Matzke LA, Barnes RO, Bartlett J, Carpenter J, Grizzle WE, Johnston RN, Mes-Masson AM, Murphy L, Sexton K, Shepherd L, Simeon-Dubach D, Zeps N, Schacter B. A framework for biobank sustainability. Biopreserv Biobank. 2014 Feb;12(1):60-8. doi: 10.1089/bio.2013.0064
Bledsoe MJ, Clayton EW, McGuire AL, Grizzle WE, O'Rourke PP, Zeps N. Return of research results from genomic biobanks: a call for data. Genet Med. 2013 Feb;15(2):159-60. doi: 10.1038/gim.2012.163. No abstract available. 

Research using biobanks

Ebert MA, Dhal B, Prunster J, McLaren S, Zeps N, House M, Reniers B, Verhaegen F, Corica T, Saunders C, Joseph DJ  Theoretical versus Ex Vivo Assessment of Radiation Damage Repair: An Investigation in Normal Breast Tissue. Radiat Res. 2016 Apr;185(4):393-401. doi: 10.1667/RR14235.1. Epub 2016 Mar 29 PMID: 27023258

Wang X, Goldstein D, Crowe PJ, Yang M, Garrett K, Zeps N, Yang JL. Overcoming resistance of targeted egfr monotherapy by inhibition of stat3 escape pathway in soft tissue sarcoma. Oncotarget. 2016 Feb 17. doi: 10.18632/oncotarget.7452. [Epub ahead of print] PMID: 26909593

Bailey P, Chang DK, Nones K, Johns AL, Patch AM, Gingras MC, Miller DK, Christ AN, Bruxner TJ, Quinn MC, Nourse C, Murtaugh LC, Harliwong I, Idrisoglu S, Manning S, Nourbakhsh E, Wani S, Fink L, Holmes O, Chin V, Anderson MJ, Kazakoff S, Leonard C, Newell F, Waddell N, Wood S, Xu Q, Wilson PJ, Cloonan N, Kassahn KS, Taylor D, Quek K, Robertson A, Pantano L, Mincarelli L, Sanchez LN, Evers L, Wu J, Pinese M, Cowley MJ, Jones MD, Colvin EK, Nagrial AM, Humphrey ES, Chantrill LA, Mawson A, Humphris J, Chou A, Pajic M, Scarlett CJ, Pinho AV, Giry-Laterriere M, Rooman I, Samra JS, Kench JG, Lovell JA, Merrett ND, Toon CW, Epari K, Nguyen NQ, Barbour A, Zeps N, Moran-Jones K, Jamieson NB, Graham JS, Duthie F, Oien K, Hair J, Grützmann R, Maitra A, Iacobuzio-Donahue CA, Wolfgang CL, Morgan RA, Lawlor RT, Corbo V, Bassi C, Rusev B, Capelli P, Salvia R, Tortora G, Mukhopadhyay D, Petersen GM; Australian Pancreatic Cancer Genome Initiative, Munzy DM, Fisher WE, Karim SA, Eshleman JR, Hruban RH, Pilarsky C, Morton JP, Sansom OJ, Scarpa A, Musgrove EA, Bailey UM, Hofmann O, Sutherland RL, Wheeler DA, Gill AJ, Gibbs RA, Pearson JV, Waddell N, Biankin AV, Grimmond SM. Genomic analyses identify molecular subtypes of pancreatic cancer. Nature. 2016 Mar 3;531(7592):47-52. doi: 10.1038/nature16965. Epub 2016 Feb 24. PMID: 26909576

McCoy MJ, Hemmings C, Miller TJ, Austin SJ, Bulsara MK, Zeps N, Nowak AK, Lake RA, Platell CF. Low stromal Foxp3+ regulatory T-cell density is associated with complete response to neoadjuvant chemoradiotherapy in rectal cancer. Br J Cancer. 2015 Dec 22;113(12):1677-86. doi: 10.1038/bjc.2015.427. Epub 2015 Dec 8. PMID:26645238

McCoy MJ, Hemmings C, Hillery S, Penter C, Bulsara MK, Zeps N, Platell CF Neoadjuvant chemoradiotherapy for rectal cancer: how important is tumour regression? ANZ J Surg. 2015 Dec 3. doi: 10.1111/ans.13394. [Epub ahead of print] PMID: 26631340
Smit L, Berns K, Spence K, Ryder WD, Zeps N, Madiredjo M, Beijersbergen R, Bernards R, Clarke RB An integrated genomic approach identifies that the PI3K/AKT/FOXO pathway is involved in breast cancer tumor initiation. Oncotarget. 2016 Jan 19;7(3):2596-610. doi: 10.18632/oncotarget.6354. PMID: 26595803
Waddell N et al, Whole genomes redefine the mutational landscape of pancreatic cancer. Nature. 2015 Feb 26;518(7540):495-501. doi: 10.1038/nature14169.
Collura A, Lagrange A, Svrcek M, Marisa L, Buhard O, Guilloux A, Wanherdrick K, Dorard C, Taieb A, Saget A, Loh M, Soong R, Zeps N, Platell C, Mews A, Iacopetta B, De Thonel A, Seigneuric R, Marcion G, Chapusot C, Lepage C, Bouvier AM, Gaub MP, Milano G, Selves J, Senet P, Delarue P, Arzouk H, Lacoste C, Coquelle A, Bengrine-Lefèvre L, Tournigand C, Lefèvre JH, Parc Y, Biard DS, Fléjou JF, Garrido C, Duval A. Patients with colorectal tumors with microsatellite instability and large deletions in HSP110 T17 have improved response to 5-fluorouracil–based chemotherapy. Gastroenterology. 2014 Feb;146(2):401-11.e1.
Wang Y, Ren F, Wang Y, Feng Y, Wang D, Jia B, Qiu Y, Wang S, Yu J, Sung JJ, Xu J, Zeps N, Chang Z. CHIP/Stub1 functions as a tumor suppressor and represses NF-κB-mediated signaling in colorectal cancer. Carcinogenesis. 2014 May. 35(5):983-91. doi: 10.1093/carcin/bgt393. Epub 2013 Dec 3
Candy PA, Phillips MR, Redfern AD, Colley SM, Davidson JA, Stuart LM, Wood BA, Zeps N, Leedman PJ. Notch-induced transcription factors are predictive of survival and 5-fluorouracil response in colorectal cancer patients. Br J Cancer. 2013 Aug 20;109(4):1023-30. doi: 10.1038/bjc.2013.431. Epub 2013 Jul 3

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