218 Focus of biobank: Breast cancer Membership of biobanks (networks, affiliations): ABNA (Australasian Biospecimen Network Association) Major source of funding for biobank: Competitive grant funding: National Health and Medical Research Council of Australia (Federal agency) Cancer Institute NSW (State agency) National Breast Cancer Foundation
BIOBANK PROFILES
Westmead Collection Centre Site location: Westmead Hospital, Western Sydney Local Health District, NSW Local contact: Dr. Rosemary Balleine Date of operations (date of formal start of current bank operation): January 2006 Date range of cases: January 2006–present
Proportional funding sources for biobank: Institution core budget: 0% (much in kind and infrastructure support given) Public targeted donation/foundation: 34% Grants: 65% User fees: 1% Example input statistics (bank as a whole): Overall response to consent (Yes%/No%/Unknown %): 95% Yes Total individual cases held: 4,500 % cases associated with fresh-frozen tumor biospecimens: 39% % cases with paraffin embedded biospecimens: 93% % cases with blood and blood derivatives: 87% Example output statistics: Approximate # of studies supported last year: 7 Approximate # of cases released last year: 2,230 specimens on 395 donors Publications in past year (based on biobank and users): 6 DOI: 10.1089/bio.2011.9327
Central Management Hub Site location: Westmead Millennium Institute, Westmead, NSW Local contact: Prof Christine Clarke In your view, what are the most valuable/highest priority cases in your biobanks? Those with a complete set of samples – blood, fresh tissue and paraffin embedded tissue together with a robust set of clinical data and clinical follow up and outcome information What are your major challenges? 1) Insecure funding, and the necessity to continuously apply for ongoing funding 2) Collection of long-term (5 years plus) clinical follow-up data once patients have been discharged from their treating physicians What would you do with $1 million to improve the value of your biobanks? Obtain high-density genomic and proteomic data on a subset of donors and make these data available to researchers DOI: 10.1089/bio.2011.9328
Example input statistics: Overall response to consent (Yes%/No%/Unknown %): 99% Yes Total individual cases held: 800 % cases associated with fresh-frozen tumor biospecimens: 25% % cases with paraffin embedded biospecimens: 97% % cases with blood and blood derivatives: 80% In your view, what are the most valuable/highest priority cases in your biobanks? 1) Cases with a full set of biospecimens i.e., frozen tissue, FFPE tissue and blood. 2) Cases with fully detailed clinical and treatment data. 3) Cases with the longest period of follow-up. What are your major challenges? 1) Completing the collection of informed consent from donors in the midst of intense clinical activity. 2) Collecting follow-up information over a long period. 3) Balancing the competing demands of investigators who want to access specimens for immediate use, and retaining samples until long term follow-up data is available. What would you do with $1 million to improve the value of your biobanks? Invest in centralized high-throughput processing and basic analysis of biospecimens. DOI: 10.1089/bio.2011.9329
Northern Sydney Collection Centre Site location: Kolling Institute for Medical Research, Royal North Shore Hospital, St Leonard’s, Sydney Local contact: A/Prof Deborah Marsh Date of operations (date of formal start of current bank operation): July 2007 Date range of cases: July 2007–present Example input statistics: Overall response to consent (Yes%/No%/Unknown %): 98% Yes Total individual cases held: 780
AUSTRALIAN BREAST CANCER TISSUE BANK % cases associated with fresh-frozen tumor biospecimens: 52% % cases with paraffin embedded biospecimens: 70% % cases with blood and blood derivatives: 80% In your view, what are the most valuable/highest priority cases in your biobanks? 1) Ones with a complete set of sample types – frozen tissue, serum, whole blood, formalin fixed paraffin blocks, complete datasets, clinical follow-up for as long a period as possible are of greater value as they facilitate multiple platforms/analyses. 2) Different breast cancer types are valuable to different studies, but those with longest period of follow-up are the most valuable. 3) More broadly, the bank should be representative of the community it is collecting from to be of the most value. 4) Samples that have been rigorously collected with minimal time from the patient to liquid nitrogen (for fresh frozen), rigorous standards for time on ice prior to serum processing etc. are valuable as these will be the best quality for downstream applications (RNA, any discovery based project etc.). 5) Samples collected from women with recurrence. What are your major challenges? 1) Instability of longer term funding. Poor co-ordination between state and federal levels for funding initiatives for bio-banking. 2) Collection of complete sample sets for all patients. One reason for this is that breast tumors are getting smaller and pathologists will not allocate fresh frozen tissue for small tumors. 3) Access to clinical information collected in minimal datasets by state bodies. 4) Opt out versus opt in consenting. 5) Institutional (hospital) support for an integrated tumor banking service involving surgery, pathology and tumor bank staff. At present, the challenge is that things run ad hoc, with ‘integration’ requiring a lot of time building relationships rather than being a standard part of job descriptions, best practice for clinical care etc. 6) Collection of information on status from genetic screening. What would you do with $1 million to improve the value of your biobanks? 1) Collection of research data back into the bank from studies using samples, e.g. array data, in an easily searchable and accessible form. 2) Streamlining of clinical data collection from other state initiatives who collect the same data (e.g. CINSW minimal datasets and Cancer Registry data) 3) In-house pathologist to review all samples.
219 Local contact: A/Prof Adrienne Morey Date of operations (date of formal start of current bank operation): July 2006 Date range of cases: July 2007–present Example input statistics: Overall response to consent (Yes%/No%/Unknown %): 85% Yes Total individual cases held: 625 % cases associated with fresh-frozen tumor biospecimens: 13% % cases with paraffin embedded biospecimens: 91% % cases with blood and blood derivatives: 98% In your view, what are the most valuable/highest priority cases in your biobanks? Cases in which all components can be collected: blood, plenty of fresh tumor as well as paraffin blocks - particularly if it is an unusual type of carcinoma. What are your major challenges? 1) Getting the consenting done! Patients spend so little time actually in hospital, it can be hard getting to them pre-operatively. The role of the breast care nurses in taking on this role has been critical for us - but adversely impacted by staffing changes and necessity for repeated re-training. 2) Getting fresh tumor: difficult in small lesions, and requires logistic coordination. 3) Synoptic information required by the bank is not always easy to extract from pathology reports: should improve with mandatory structured reporting. What would you do with $1 million to improve the value of your biobanks? Having dedicated banking technicians in all major hospitals would assist not only the breast bank but other banks too. The breast bank has been more successful than many other banks because it has provided financial support to pathology departments to undertake this work, rather than expecting it to be done gratis.
DOI: 10.1089/bio.2011.9331
Hunter Region Collection Centre Site location: Hunter Area Pathology Service, John Hunter Hospital, Newcastle, NSW Local contact: Prof. Rodney Scott
DOI: 10.1089/bio.2011.9330
Date of operations (date of formal start of current bank operation): June 2007
St Vincent’s Collection Centre
Date range of cases: June 2007–present
Site location: St Vincent’s Hospital, Darlinghurst, Eastern Sydney
Example input statistics: Overall response to consent (Yes%/No%/Unknown %): 99% Yes
BIOBANK PROFILES
Westmead Collection Centre Site location: Westmead Hospital, Western Sydney Local Health District, NSW Local contact: Dr. Rosemary Balleine Date of operations (date of formal start of current bank operation): January 2006 Date range of cases: January 2006–present
Proportional funding sources for biobank: Institution core budget: 0% (much in kind and infrastructure support given) Public targeted donation/foundation: 34% Grants: 65% User fees: 1% Example input statistics (bank as a whole): Overall response to consent (Yes%/No%/Unknown %): 95% Yes Total individual cases held: 4,500 % cases associated with fresh-frozen tumor biospecimens: 39% % cases with paraffin embedded biospecimens: 93% % cases with blood and blood derivatives: 87% Example output statistics: Approximate # of studies supported last year: 7 Approximate # of cases released last year: 2,230 specimens on 395 donors Publications in past year (based on biobank and users): 6 DOI: 10.1089/bio.2011.9327
Central Management Hub Site location: Westmead Millennium Institute, Westmead, NSW Local contact: Prof Christine Clarke In your view, what are the most valuable/highest priority cases in your biobanks? Those with a complete set of samples – blood, fresh tissue and paraffin embedded tissue together with a robust set of clinical data and clinical follow up and outcome information What are your major challenges? 1) Insecure funding, and the necessity to continuously apply for ongoing funding 2) Collection of long-term (5 years plus) clinical follow-up data once patients have been discharged from their treating physicians What would you do with $1 million to improve the value of your biobanks? Obtain high-density genomic and proteomic data on a subset of donors and make these data available to researchers DOI: 10.1089/bio.2011.9328
Example input statistics: Overall response to consent (Yes%/No%/Unknown %): 99% Yes Total individual cases held: 800 % cases associated with fresh-frozen tumor biospecimens: 25% % cases with paraffin embedded biospecimens: 97% % cases with blood and blood derivatives: 80% In your view, what are the most valuable/highest priority cases in your biobanks? 1) Cases with a full set of biospecimens i.e., frozen tissue, FFPE tissue and blood. 2) Cases with fully detailed clinical and treatment data. 3) Cases with the longest period of follow-up. What are your major challenges? 1) Completing the collection of informed consent from donors in the midst of intense clinical activity. 2) Collecting follow-up information over a long period. 3) Balancing the competing demands of investigators who want to access specimens for immediate use, and retaining samples until long term follow-up data is available. What would you do with $1 million to improve the value of your biobanks? Invest in centralized high-throughput processing and basic analysis of biospecimens. DOI: 10.1089/bio.2011.9329
Northern Sydney Collection Centre Site location: Kolling Institute for Medical Research, Royal North Shore Hospital, St Leonard’s, Sydney Local contact: A/Prof Deborah Marsh Date of operations (date of formal start of current bank operation): July 2007 Date range of cases: July 2007–present Example input statistics: Overall response to consent (Yes%/No%/Unknown %): 98% Yes Total individual cases held: 780
AUSTRALIAN BREAST CANCER TISSUE BANK % cases associated with fresh-frozen tumor biospecimens: 52% % cases with paraffin embedded biospecimens: 70% % cases with blood and blood derivatives: 80% In your view, what are the most valuable/highest priority cases in your biobanks? 1) Ones with a complete set of sample types – frozen tissue, serum, whole blood, formalin fixed paraffin blocks, complete datasets, clinical follow-up for as long a period as possible are of greater value as they facilitate multiple platforms/analyses. 2) Different breast cancer types are valuable to different studies, but those with longest period of follow-up are the most valuable. 3) More broadly, the bank should be representative of the community it is collecting from to be of the most value. 4) Samples that have been rigorously collected with minimal time from the patient to liquid nitrogen (for fresh frozen), rigorous standards for time on ice prior to serum processing etc. are valuable as these will be the best quality for downstream applications (RNA, any discovery based project etc.). 5) Samples collected from women with recurrence. What are your major challenges? 1) Instability of longer term funding. Poor co-ordination between state and federal levels for funding initiatives for bio-banking. 2) Collection of complete sample sets for all patients. One reason for this is that breast tumors are getting smaller and pathologists will not allocate fresh frozen tissue for small tumors. 3) Access to clinical information collected in minimal datasets by state bodies. 4) Opt out versus opt in consenting. 5) Institutional (hospital) support for an integrated tumor banking service involving surgery, pathology and tumor bank staff. At present, the challenge is that things run ad hoc, with ‘integration’ requiring a lot of time building relationships rather than being a standard part of job descriptions, best practice for clinical care etc. 6) Collection of information on status from genetic screening. What would you do with $1 million to improve the value of your biobanks? 1) Collection of research data back into the bank from studies using samples, e.g. array data, in an easily searchable and accessible form. 2) Streamlining of clinical data collection from other state initiatives who collect the same data (e.g. CINSW minimal datasets and Cancer Registry data) 3) In-house pathologist to review all samples.
219 Local contact: A/Prof Adrienne Morey Date of operations (date of formal start of current bank operation): July 2006 Date range of cases: July 2007–present Example input statistics: Overall response to consent (Yes%/No%/Unknown %): 85% Yes Total individual cases held: 625 % cases associated with fresh-frozen tumor biospecimens: 13% % cases with paraffin embedded biospecimens: 91% % cases with blood and blood derivatives: 98% In your view, what are the most valuable/highest priority cases in your biobanks? Cases in which all components can be collected: blood, plenty of fresh tumor as well as paraffin blocks - particularly if it is an unusual type of carcinoma. What are your major challenges? 1) Getting the consenting done! Patients spend so little time actually in hospital, it can be hard getting to them pre-operatively. The role of the breast care nurses in taking on this role has been critical for us - but adversely impacted by staffing changes and necessity for repeated re-training. 2) Getting fresh tumor: difficult in small lesions, and requires logistic coordination. 3) Synoptic information required by the bank is not always easy to extract from pathology reports: should improve with mandatory structured reporting. What would you do with $1 million to improve the value of your biobanks? Having dedicated banking technicians in all major hospitals would assist not only the breast bank but other banks too. The breast bank has been more successful than many other banks because it has provided financial support to pathology departments to undertake this work, rather than expecting it to be done gratis.
DOI: 10.1089/bio.2011.9331
Hunter Region Collection Centre Site location: Hunter Area Pathology Service, John Hunter Hospital, Newcastle, NSW Local contact: Prof. Rodney Scott
DOI: 10.1089/bio.2011.9330
Date of operations (date of formal start of current bank operation): June 2007
St Vincent’s Collection Centre
Date range of cases: June 2007–present
Site location: St Vincent’s Hospital, Darlinghurst, Eastern Sydney
Example input statistics: Overall response to consent (Yes%/No%/Unknown %): 99% Yes
