About the program
OverviewBiobank Registration Program Summary
The program aims to implement registration of new collections of human research biospecimens that are collected, stored, and used for health research. The single term ‘biobank’ is used throughout the program to encompass all types of research collections irrespective of size or type.Program Goals
- To improve human biospecimen quality and availability for research through introduction to educational materials and registration of collections that will create a common understanding across all researchers of how to conduct biobanking to conform to international standards and a mechanism for researchers to find collections
- To align Canadian human biobank standards with international standards and best practices in order to facilitate compilations of cohorts representative of both broad populations and precise subgroups. This will enable research participation in national and international collaborations and promote robust translation of knowledge to support precision medicine
- To uphold and promote public trust in researchers and organizations collecting biospecimens for research purposes through improved biobank governance and increased transparency around biobanking. This will encourage more Canadians participants to donate samples to biobanks for health research purposes and will reduce the potential or perception of risk for institutions.
Benefits and Value of the programEngagement with the program will give researchers
- access to education about handling research biospecimens
- increased access to known-quality fit-for-purpose biospecimens
- the ability to draw on similar cohorts in order to validate their studies
- increased competitiveness – quality of future data generated on biospecimens of known standard can be recognized by journals and peer reviewers
- Biospecimens (eg tissue and blood samples) are a critical fuel that increasingly drives current clinical care and that drives research to create better health.
- Biospecimens are obtained from patients and through a set of processes called ‘biobanking’ are collected, processed, analyzed and stored to provide information that supports diagnosis and treatment decisions.
- This same set of processes overlaps with the collection of biospecimens for research biobanks, and clinical and research biobanking are increasingly intertwined.
- When our current health systems were established over 50 years ago, the relative importance of this ‘biospecimen derived’ information and the operational pipeline that generates it, was low and the attention given to the quality and efficiency of the biospecimen pipeline was limited.
- Times have changed.
- For example, before 2005 an oncologist considering the diagnosis and treatment options for a breast cancer patient would first consider features of the patient and the disease such as tumour size and stage, and then integrate limited ‘biospecimen derived’ information. Now the first feature considered is the ‘biospecimen derived’ information. However the biospecimen pipeline that underpins this transition to ‘personalized/predictive medicine’ is antiquated and relatively unstandardized.
- the validity and robustness of biospecimen derived information used by clinicians and studied by researchers is subject to variations,
- the governance of the research use of biospecimens is uneven,
- the cost of duplication and storage of biospecimens of uncertain provenance is growing.
Assessment of the effectiveness of existing and new treatments for responsible management of our scare health care resources is also dependent on having confidence that known and common standards are being applied to ensure biospecimen quality.
Definitions and Inclusion/Exclusion CriteriaBiobank
- The single term ‘biobank’ is used throughout the program to encompass all types of research collections irrespective of size or type. These collections arise in the course of pursuing basic research projects, translational research studies, clinical studies and trials, as well as when creating a collection to support future health research.
- The term biospecimen encompasses intact human tissues including
- - fresh or preserved tissues
- - fractionated blood and fluids
- The term biospecimen does not include derivatives or products that arise from processing
- - extracted molecules
- - tissue sections or cells on slides
- - cell lines
Click here to get a full list of tissues and formats included and excluded in the programInclusion Criteria
- New biospecimen research collections that arise in the course of pursuing - basic research projects, translational research studies, clinical studies and trials, (ie when creating a collection to support future health research)
- Biospecimen collections that are
- intended for clinical purposes
- part of industry sponsored studies
- stored for less than three months
Biobank LocatorBiobank Locator Summary.
The Biobank Locator is an online searchable database of Canadian research biospecimen collections. You can search the database by adding free text into the Search box in the top upper right hand corner of the locator. You can search by collection name, principal investigator, key words, institution etc). You can also get more information about the biospecimen collections and contact details for inquiries by clicking on the name of the collection. If you want to access the biobank locator, you will be asked to provide an email address so we can report on who is accessing our biobank locator. You can add your research collection to the Biobank Locator by signing up here canreg.biobanking.org If you find information about your research collection on the locator that needs to be edited or corrected, you can login to the site and make the edits yourself or contact us at firstname.lastname@example.org.Scroll