Governance

Biospecimens and associated data are collected from patients across Australia, enabling comprehensive, longitudinal research into asbestos and dust-related diseases. The biobank operates under the custodianship of the Biobank Leader and Coordinating Principal Investigator (CPI), who also serves as ADDRI Academic and Research Director. The biobank’s operations are further supported by the ADDRI Clinical Research Fellow, ADDRI Head of Research Operations and Governance, ADDRI Biobank Officer, and designated staff members, ensuring the secure management and appropriate use of biospecimens and data.

Through the ADDRI Biobank, researchers gain access to the high-quality biospecimens and associated annotated data (clinical details) needed to unravel the biological underpinnings of these devastating diseases and to develop effective prevention, diagnostic, and treatment strategies.

The significant health and economic burden of mesothelioma, asbestos-related diseases, and emerging conditions like silicosis highlights the urgent need for expanding research. The ADDRI Biobank addresses this need by providing high-quality biospecimens and clinical data to support studies on diseases mechanisms, treatment responses, and prevention strategies.

Established in 2010 by the Asbestos Disease Research Foundation (ADRF), a not-for-profit charity, the ADDRI Biobank is funded through a combination of public and private support. These contributions are made in line with ADRF’s charitable objectives and are not associated with any conflict of interest.

Biobank standards and quality assurance

The ADDRI Biobank has successfully completed the NSW Health Pathology Biobank Certification Program. To ensure data quality, the Biobank follow rigorous collection and processing procedures as outlined in this protocol. These practices are supported by internal audit and strict adherence to Standard Operating Procedures.

The Biobank Management Committee

The Biobank Management Committee is responsible for overseeing data accrual, personnel, and day-to-day operations of the ADDRI Biobank. It reviews internal applications from researchers to assess the suitability of proposed projects requesting access to biospecimens and associated data held by the Biobank. The Committee also approves the release of requested biospecimens and data for approved research purposes.

• ADDRI Biobank CPI
• ADDRI Biobank Officer
• ADDRI Clinical Lead
• ADDRI Head of Research Operations and Governance
• Consumer Representative
• Secretary

The Biobank Steering Committee

The Steering Committee provides strategic guidance, oversight and support for the activities of the ADDRI Biobank, as defined in the ADDRI Steering Committee Terms of Reference. Its key responsibilities include ensuring sound scientific and administrative governance, overseeing resource allocation, and supporting the development of strategic projects. The Committee also reviews and determines the suitability of external applications for access to and release of biospecimens and data for ethically approved projects.

The Steering Committee is comprised of a minimum of eight members, including representatives from ADDRI and other stakeholders, as follows:

• ADDRI Biobank CPI
• ADDRI Clinical Lead
• ADDRI Biobank Officer
• ADDRI Chief Scientist
• ADDRI Head of Research Operations and Governance
• Pathologist
• Surgeon
• Medical Oncologist or Respiratory Consultant
• Community representative – Consumer (patient) volunteer or patient advocacy representative
• External/non-contributing medically trained specialist

Custodianship

Data and biospecimens held in the ADDRI Biobank are under the custodianship of the ADDRI Biobank CPI.

Ethics

As research biobanks are classified as research platform ‘projects’, the ADDRI Biobank operates under the approval of the lead Human Research Ethics Committee (HREC) – The Concord Ethics Committee – and undergoes annual ethics review. The review focuses on the biobank’s objectives, consent materials, recruitment protocols, participants enrolment and biospecimen release statistics, as well as security measures.