Biobanking

Making the case for Centralised Biobanking in WA

Careful management of bio-specimens for current and future research is fundamental for high quality and reproducible research. There’s a need in WA to establish a harmonised sample collection, storage, curation and management system which will allow ethically acceptable standardisation across cohorts and registries. This will assist with avoiding duplication of effort and investment.

With Medical Research Future Funds (MRFF), WAHTN commissioned a scoping project in 2018 to develop recommendations for national guidelines and piloting infrastructure for a scalable, shared, and standardised data repository of clinical and research genomics resource facility in WA. The project, overseen by Dr Aron Chakera, has the potential to be scaled nationally and has produced an international scan of Biobank resources, facility ethics and economics across Australia, the UK and Japan. To inform the Report a questionnaire was sent out to a number of WA stakeholders to gather information and feedback on the establishment of a centralised biobank in WA. With follow up interviews, the project team were able to clarify and understand the data and specimen banking requirements across different studies and Biobanks in WA.

A stakeholder engagement workshop was held in October 2018 with the aim of developing working groups to further advance the discussion points around:

  • Governance
  • Ethics
  • Quality Assurance
  • Data Management
  • Infrastructure
  • Funding

The minutes and slides presented at the workshop are available online.

What are the next steps? In order to further develop a plan for a centralised Biobank in WA, interested parties were invited to join one of the six working groups listed above. Each working group addressed the issues and defined actions which need to occur to create the Biobank hub in the context of each specific group. The Chair for each working group is responsible for compiling key messages and summarise recommendations, tasks, and actions as discrete projects (small / medium / large, short term / mid term / long term etc). Subsequently a WA Biobank Committee chaired by Aron Chakera was formed in late 2019.

For further information please contact Jennie Hui and Aron Chakera.

 

Trialling of a Biobanking Informatics Platform for WA

WAHTN has contributed funds towards the costs of a Telethon Kids Institute (TKI) initiated project which purchased OpenSpecimen and configured it within TKI servers for supporting complex Biobanking operations. WAHTN funding contributed to the training of IT and Biobanking personnel in the configuration and use of the platform. OpenSpecimen was used initially to support the Joondalup Heath Campus based ORIGINS Biobank and proved to be of great benefit.

As such, the Steering Committee has agreed to make OpenSpecimen the default software for WA biobanking. The challenges of COVID-19 have realised funding for research infrastructure and allowed the purchase of a new OpenSpecimen licence for WA with the long term goal to use OpenSpecimen to support other research across WA.

 

WAHTN Biobank Registry

Biobank NameContactPhoneEmailType of biobankDescriptionNumber of samplesSample typesData typesInstitutionWebsiteUser typeCollection period
Nicotine Dependence StudySulev Koks08 6457 0313sulev.koks@perron.uwa.edu.auCohortThis a collection of DNA from 1800 male subjects who all filled in questionnaires on smoking behaviour with the Fagerström Test for Nicotine Dependence. This cohort is from Vietnam.1,001 - 10,000DNAPatient QuestionnairesPerron Institute for Neurological and Translational ResearchOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2014 - 2016
NCARD BiobankJenette Creaney08 6151 0896jenette.creaney@uwa.edu.auCase Control, Longitudinal, Disease Specific, CohortBased at SCGH, the NCARD Biobank is dedicated to medical research focused on improving diagnosis and treatment of asbestos related diseases such as mesothelioma, as well as other health conditions. Over the past 25 years, 3000 Western Australians have donated clinical samples to the NCARD Biobank. The biobank has supported over 30 different projects with approximately 10,000 biospecimens used in medical research.10,001 - 100,000Blood, Plasma, Serum, DNA, RNA, Urine, Immortalised Cell Lines, Tissue (Frozen), Primary Cells, Pleural EffusionsDemographic Data, Medical RecordsSir Charles Gairdner Hospital, University of Western Australiaresphealth.org.au/ncard-biobankOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.1994 - ongoing
LIBI (lifelong impact of burn injury)Mark Fear0411 355 944mark.fear@uwa.edu.auLongitudinal, Disease SpecificSamples collected from children attending PCH for treatment for a burn injury. Longitudinal sample collection across clinical follow-up.101 - 1,000Plasma, DNA, RNA, Faeces, Urine, Primary Cells, HairDemographic Data, Patient Questionnaires, Medical RecordsUniversity of Western AustraliaOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2020 - ongoing
Helicobacter Research BiobankAlfred Chin Yen Tay08 6457 4817alfred.tay@uwa.edu.auCohort, Cross Sectional, Population Based, Disease SpecificClinical Helicobacter pylori strains.1,001 - 10,000Microbiological, Tissue (Frozen)Medical Records, Physiological / Biochemical MeasurementsUniversity of Western AustraliaMono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties.1997 - 2018
PlusLife (Perth Bone & Tissue Bank Inc)Anne Cowie08 6144 3500anne.cowie@pluslife.org.auDonated human musculoskeletal tissue for transplant purposes. Some tissue deemed not suitable for Tx is available for research purposes.1,001 - 10,000Tissue (Frozen)Demographic Data, Patient Questionnaires, Medical Recordspluslife.org.auMono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties.1990 - ongoing
Neurodegenerative Disease BiobankSue Fletcher0403 079 633s.fletcher@murdoch.edu.auDisease SpecificCollection of dermal fibroblasts, lymphocytes, DNA, whole blood from patients with neurodegenerative disease, plus some healthy controls.101 - 1,000Blood, DNA, Immortalised Cell Lines, Primary CellsMedical Records, Physiological / Biochemical MeasurementsMurdoch UniversityPoly: A biobank that generally has a larger accrual scope, resources and multiple users outside the biobank proper.2016 - ongoing
Health in Men StudyLeon Flicker08 9224 0377leon.flicker@uwa.edu.auCohort, Longitudinal, Population BasedThe Health In Men Study (HIMS) arose out of a population-based randomized trial of screening for abdominal aortic aneurysms conducted in Perth in 1996-99. All men were identified from an electronic copy of the electoral roll, the target age range was 65-79 years. In total, 12,203 men attended for baseline screening and of these 4,249 returned for a resurvey and provided a blood sample in 2001-4. Cholesterol, HDL, LDL, triglycerides, glucose, creatinine, C-reactive protein and homocysteine were all measured.1,001 - 10,000Plasma, Serum, DNADemographic Data, Patient Questionnaires, Medical Records, Physiological / Biochemical MeasurementsUniversity of Western AustraliaPoly: A biobank that generally has a larger accrual scope, resources and multiple users outside the biobank proper.2001 - 2017
Fremantle Diabetes StudyTimothy Davis08 9431 3229tim.davis@uwa.edu.auCohort, Longitudinal, Population Based, Disease SpecificSerum/plasma and DNA/RNA from approximately 3,000 people with diabetes recruited between 1993 and 2011.10,001 - 100,000Plasma, Serum, DNA, RNADemographic Data, Patient Questionnaires, Physiological / Biochemical MeasurementsUniversity of Western AustraliaMono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties.1993 - 2019
Curtin CCRE BiobankChristopher Reid0419 319 496christopher.reid@curtin.edu.auCohort, Population BasedBiobanking samples from volunteers participating in CCRE studies: PACIFIC / STAREE.1 - 100Blood, Plasma, SerumDemographic Data, Patient Questionnaires, Physiological / Biochemical MeasurementsCurtin UniversityOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2019 - ongoing
A follow-up of the WA Kidskin StudyProfessor David Mackey08 9381 0841david.mackey@lei.org.auCohortWe are assessing myopia rates in approximately 900 of 1776 original young adult participants who were part of the Western Australian Kidskin Study while they were in primary school in the 1990s. The Kidskin Study intervention resulted in a reduction in time spent outdoors and an increase in the use of sun protection while outdoors. We wish to now investigate the possible impact that this intervention has had on the development of myopia in these participants who are now young adults.101 - 1,000Blood, DNAPatient Questionnaires, Imaging Data, Physiological / Biochemical MeasurementsLions Eye InstituteMono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties.2015 - ongoing
WA Family Study of SchizophreniaWinthrop Professor Vera A Morgan08 6488 6954vera.morgan@uwa.edu.auCase Control, Cohort, Population BasedThe West Australian Family Study of Schizophrenia biobank is an invaluable collection of biological samples and a uniquely rich phenotype and genotype database of more than 1400 individuals, comprising schizophrenia cases, first degree relatives and unrelated controls. The data and samples have been collected over the past 20 years from participants that have been assessed using various cognitive, diagnostic, neurological, biological, and personality measurements.1,001 - 10,000Plasma, Serum, DNA, RNA, Immortalised Cell LinesDemographic Data, Patient Questionnaires, Imaging Data, Genealogical Records, Physiological / Biochemical MeasurementsUniversity of Western Australiauwa.edu.au/facilities/centre-for-clinical-research-in-neuropsychiatryOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.1996 - 2017
TARRGET Glaucoma StudyProfessor David Mackey08 9381 0841david.mackey@lei.org.auPopulation Based, Disease SpecificThe TARRGET pilot study selected 100 families in SA from advanced glaucoma index cases in the Australian & New Zealand Registry of Advanced Glaucoma (ANZRAG). The data showed that >50% of screened first­degree relatives (FDRs) had signs suspicious of glaucoma or definite glaucoma, as well as detecting new suspect and definite glaucoma. The study has now expanded nationally to educate and screen FDRs. We will audit uptake rates of families and relatives with information incorporated into ANZRAG.101 - 1,000Blood, DNA, SalivaDemographic Data, Patient Questionnaires, Imaging Data, Genealogical Records, Physiological / Biochemical MeasurementsLions Eye Institute, Flinders University, University of Western AustraliaOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2017 - ongoing
Ophthalmic Western Australian BiobankProfessor David Mackey08 9381 0841david.mackey@lei.org.auCohort, Longitudinal, Twin Study, Disease SpecificOWAB is a resource for research into eye disease incorporating clinical data and biological specimens. It facilitates core research projects into eye disease aetiology, prevention and detection, development of new therapies and genetic risk. Participants include patients with an eye condition who have attended a clinical appointment at the Lions Eye Institute as well as a control group, i.e. those with normal healthy eyes recruited from unaffected relatives and individuals attending the clinic.1,001 - 10,000Blood, DNA, Saliva, Urine, Tissue (Frozen)Patient Questionnaires, Imaging Data, Genealogical Records, Physiological / Biochemical MeasurementsLions Eye InstituteOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2012 - ongoing
Glaucoma Inheritance Study in TasmaniaProfessor David Mackey08 9381 0841david.mackey@lei.org.auLongitudinal, Population Based, Disease SpecificGlaucoma Inheritance Study in Tasmania has created one of the largest glaucoma biobanks in the world, with over 5,000 DNA samples and clinical material from familial and sporadic cases of glaucoma stored in OWAB. This study resulted in the discovery of the myocilin gene and its association with glaucoma and has also examined the impact of providing DNA testing and results to glaucoma families and currently working on models of cascade family screening for glaucoma. 1,001 - 10,000Blood, DNA, Primary CellsImaging Data, National Registries, Genealogical RecordsFlinders University, University of Tasmania, University of Western AustraliaOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.1993 - ongoing
Twins Eye StudyProfessor David Mackey08 9381 0841david.mackey@lei.org.auCohort, Twin Study, Population BasedTwins Eye Study in Tasmania, QLD and WA links in with other twins work in Australia, with over 1000 pairs of twins and 200 siblings extensively phenotyped for ocular biometry. DNA samples and clinical material is stored in OWAB. Analysis of their 610K SNP DNA is providing insight into genetics of factors such as central corneal thickness, intraocular pressure and optic disc cup size. Results of the Genome Wide Association Study on this cohort are now deposited in the NIH dbGaP data repository.1,001 - 10,000Blood, DNAImaging Data, Genealogical Records, Physiological / Biochemical MeasurementsUniversity of Tasmania, QIMR Berghofer MIR, Lions Eye InstituteOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2000 - ongoing
Eye Protection StudyProfessor David Mackey08 9381 0841david.mackey@lei.org.auPopulation BasedOutdoor activity involves exposure to sun, which has both beneficial and potentially harmful effects on the eye. In this study, we are evaluating the use of eye protection by those involved in sporting and outdoor activities; determining evidence of any sun damage to the eye in these groups; and assessing the early glaucomatous damage to eye. Biological data for this study is stored in the Ophthalmic Western Australian Biobank.101 - 1,000DNA, MicrobiologicalImaging Data, Physiological / Biochemical MeasurementsLions Eye Institute, University of Western AustraliaMono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties.2012 - ongoing
Colour Vision DeficiencyProfessor David Mackey08 9381 0841david.mackey@lei.org.auPopulation Based, Disease SpecificThe aim of this study was to compare the structure and anatomy of eyes of people who are 'colour blind' or who have a colour vision deficiency (CVD) with the eyes of people with normal colour vision. We also tested whether there are skills and tasks that people who are 'colour blind' or who have a colour vision deficiency (CVD) can perform faster or more accurately that people with normal colour vision. The DNA samples for this study are stored in the Ophthalmic Western Australian Biobank.1 - 100DNA, SalivaPatient Questionnaires, Physiological / Biochemical MeasurementsLions Eye Institute, University of Western AustraliaMono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties.2015 - 2018
Western Australia Retinal Degeneration StudyFred Chen0466 646 399fredchen@lei.org.auCase Control, Cohort, Disease SpecificThis is a natural history study of retinal degeneration. Patients provide skin and blood samples for research into the pathogenesis of retinal degeneration and development of personalised therapy.101 - 1,000Blood, Plasma, Serum, DNA, RNA, Immortalised Cell Lines, Primary CellsDemographic Data, Imaging Data, Medical RecordsLions Eye InstituteOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2015 - ongoing
Western Australian Pregnancy BiobankProfessor Jeffrey Keelan08 6458 1880jeff.keelan@uwa.edu.auCross SectionalWestern Australian Pregnancy Biobank (WAPB) is a biorepository of samples and associated clinical data from pregnancies at high risk of preterm delivery and related complications. The WAPB is an invaluable database used to assist researchers - both local and external - to expand knowledge and understanding of the causes of preterm birth, its prediction and effective treatment therewith aiming to reduce the rates of prematurity and other pregnancy complications.1,001 - 10,000Blood, Plasma, Serum, RNA, Saliva, Urine, Microbiological, Tissue (Frozen), Tissue (FFPE)Demographic Data, Patient Questionnaires, Medical RecordsWomen and Infants Research Foundation, University of Western Australiathewholeninemonths.com.au/biobankOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2015 - 2018
WA DNA BankMichael Epis0413 303 638michael.epis@uwa.edu.auCohort, Longitudinal, Disease SpecificThe Western Australian DNA Bank is a state-of-the-art national processing and long-term secure storage facility for biospecimens (including DNA, RNA, serum and plasma) that have been collected from participants of medical research projects. The WA DNA Bank itself does not recruit these participants, but processes and stores biospecimens for medical researchers who have collected a sample from consenting donors. A key aim of the WA DNA Bank is to facilitate access to human DNA collections in WA.10,001 - 100,000Blood, Plasma, Serum, DNA, RNA, Saliva, UrineDemographic DataUniversity of Western Australiagohad.uwa.edu.au/enabling-resources/biobankingOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2004 - ongoing
Perkins Cancer BiobankLouise Winteringham08 6151 0737louise.winteringham@perkins.org.auDisease SpecificThe Perkins Cancer Biobank is a biobank of extensively characterised tumour samples with associated clinical information. Fresh tumour samples collected during surgical or diagnostic procedures undergo a set of core molecular assays prior to cryopreservation. Stored data and biospecimens will be used for ethically and scientifically approved research that is consistent with our overall goal of improving the outcomes of cancer treatment. 1 - 100Serum, Tissue (Frozen)Demographic Data, Imaging Data, Medical Records, Physiological / Biochemical MeasurementsHarry Perkins Institute of Medical ResearchPoly: A biobank that generally has a larger accrual scope, resources and multiple users outside the biobank proper.2020 - ongoing
ICAD StudyVirginie Lam08 9266 3893virginie.lam@curtin.edu.auCohort, Cross Sectional, Population BasedA cohort of 347 West Australians (20-80 years) were recruited between 2011-2012 to determine whether certain plasma biomarkers, related to dietary influences, were associated with mild cognitive impairment. We have a substantive databank of plasma biomarkers, neuropsychological performance data specific to age-related cognitive decline, and information on dietary patterns, anthropometric measurements, lifestyle (work/exercise patterns), supplement use, and medical history/current medications.101 - 1,000Plasma, SerumDemographic Data, Patient Questionnaires, Medical Records, Physiological / Biochemical MeasurementsCurtin UniversityMono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties.2011 - 2013
National SHIPAnna Waterreus08 9347 6438anna.waterreus@uwa.edu.auCross Sectional, Population Based, Disease SpecificThe 2010 national psychosis prevalence survey (Survey of High Impact Psychosis-SHIP covered: psychopathology, functioning and disability, cognition, substance use, education, employment, income, accommodation, medication use, service utilisation and needs, and physical health (including fasting blood tests). About 1/4 of the survey sample of 1825 participants with psychotic disorders, including schizophrenia, also consented to providing a blood sample for DNA and plasma.101 - 1,000Plasma, DNADemographic Data, Patient Questionnaires, National Registries, Physiological / Biochemical MeasurementsNeuroscience Research AustraliaOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2010 - 2010
The Raine StudyAlex D'Vauz08 6488 6957alex.dvauz@uwa.edu.auCohort, Longitudinal, Population Based, Birth CohortThe Raine Study is a longitunal cohort study that has collected biosamples for over 30 years from pregnancy to early adulthood and across multiple generations. 10,001 - 100,000Blood, Plasma, Serum, DNA, Faeces, UrineDemographic Data, Patient Questionnaires, Imaging Data, Medical Records, Physiological / Biochemical MeasurementsUniversity of Western Australiarainestudy.org.auOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.1989 - ongoing
WARTBANCDr Jenny McCloskey08 9224 3560jenny.mcCloskey@health.wa.gov.auDisease SpecificThe WA Research Team Biobank of Anogenital Neoplasia and Condylomata (WARTBANC) was developed for research into HPV-associated anogenital disease. This Biobank compiles excised tissues, blood and clinical data from patients treated surgically for anogenital condylomata and assessment for AIN at RPH and longitudinal data and samples from patients previously treated/ assessed at RPHSHS and prospectively consented for use of their data and samples in unspecified future research.10,001 - 100,000Blood, Serum, Microbiological, Tissue (Frozen)Demographic Data, Medical RecordsRoyal Perth HospitalOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.1995 - ongoing
Busselton Population Medical Research InstituteJennie Hui08 6383 4218jennie.hui@health.wa.gov.auCohort, Cross Sectional, Longitudinal, Quality Control, Population BasedBPMRI's medical and population health research aims for a better understanding and management of disease and illness. The institute's research activities are diverse and encompass a wide range of health conditions and measures. Our areas of study include sleep disorders, respiratory diseases, cardiovascular diseases, diabetes, genetics and others.> 1,000,000Blood, Plasma, Serum, DNA, RNA, Urine, Immortalised Cell Lines, Microbiological, Sputum, Throat SwabsDemographic Data, Patient Questionnaires, Imaging Data, Medical Records, Physiological / Biochemical MeasurementsBusselton Population Medical Research Institutebpmri.org.auPoly: A biobank that generally has a larger accrual scope, resources and multiple users outside the biobank proper.1966 - ongoing
Charles Day Tissue BankDr Carolyn Grove08 6383 4247PathWest.QEIIHaemR&DTissueBanking
@health.wa.gov.au
Cross Sectional, Longitudinal, Disease SpecificThe Charles Day Tissue Bank comprises samples of blood, bone marrow, lymph node or other tissue from patients being investigated for haematological cancers and other blood disorders. It is situated in the Haematology Department at PathWest, Queen Elizabeth II Medical Centre, but runs as a cross-site collaboration with contribution of samples from the adult tertiary hospitals in Western Australia. It aims to support high quality research and diagnostic innovation in the field of haematology. 10,001 - 100,000Blood, Serum, Primary Cells, Tissue (Frozen)Demographic Data, Physiological / Biochemical MeasurementsPathWestPoly: A biobank that generally has a larger accrual scope, resources and multiple users outside the biobank proper.2012 - ongoing
Neuromuscular and other rare diseasesSue Fletcher0403 079 633s.fletcher@murdoch.edu.auCase Control, Cross Sectional, Disease SpecificCollection of myogenic cells, dermal fibroblasts, lymphocytes, DNA, whole blood from patients with inherited disease, plus some healthy controls.1,001 - 10,000Blood, DNA, Immortalised Cell Lines, Primary Cells, Tissue (Frozen)Medical Records, Physiological / Biochemical MeasurementsMurdoch UniversityOligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group.2000 - ongoing
CMV & CVDPatricia Price0438 480 882patricia.price@curtin.edu.auCase Control, Cohort, Cross Sectional, Longitudinal, Population BasedThe biobank comprises plasma, DNA, PBMC and saliva from ~80 renal transplant recipients and 80 healthy controls collected in 2014. In 2017, 100 participants donated follow-up samples. Biomarkers and cardiovascular health were assessed at both time points. We also have measures of the burden and footprint of CMV.101 - 1,000Blood, Plasma, DNA, Saliva, Primary CellsDemographic Data, Physiological / Biochemical MeasurementsCurtin UniversityMono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties.2014 - 2017

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