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BIO-PORTAL, Canada

Objective: This Biobank repository will safely collect, store, share/distribute, and analyse human biological materials as well as medical and biomedical Data associated with these materials for the purposes of health research studies. The LD-BiRDS will collect appropriate biospecimen and clinical Data, which can then be used for any study with REB approval for the use of this Biobank. The primary objectives and goals of this Biobank are to: • Provide the technical and logistical infrastructure for the LD-BiRDS by collecting and maintaining biospecimen, Data and their associated information derived from biological material: genomic, digital health Data, and imaging studies. • Increase the clinical, public and research value and utility of the LD-BiRDS by: o Designing an informed consent form that invites all invited CIUSSS participants to be consenting participants. o Respecting scientific, bioinformatics, ethical and legal policies, and principles. o Enabling broad access, by qualified and approved researchers, to coded de-identified Data & Samples granted to bona fide responsible researchers conducting research that are limited to programs of research approved by an REB. This will include mandating the return of results from research projects derived from LD-BiRDS Data or Samples provided to researchers. o Enabling withdrawal from the LD-BiRDS by any participant at any time. o Seeking consent for participant recall when after the analysis of clinical Data, or biological specimens, the participant is contacted and made aware of potential studies in which they may be eligible to participate. o Enhancing the development and discovery of new pharmaceuticals, diagnostic and therapeutic approaches, through sharing Samples and Data with commercial organizations. o Respond to timely research questions about diseases that affect public health, such as COVID-19. o Sharing data and biological samples with qualified investigators who have appropriate REB approval for their research program and agree to contractual obligations to respect the confidential and security of these data and samples. As an organizational and public resource, LD-BiRDS will seek to collect Data and Samples from subjects across our CIUSSS to help ensure representation of ethnicity, gender, minority groups, different age/ demographics, (in)equality or (rare) disease group etc. with a Dataset representing our local population and hence delivering benefits to wider society. This will help ensure participants are representative of our local population. Currently most research studies are predominantly derived from people of European descent, which limits the clinical utility of these findings as many patients cared for by the CIUSSS are not of European descent. The LD-BiRDS will seek to pro-actively engage in an on-going dialogue with the public, participants, participant representatives and the wider community as the biobank, technologies and public opinions evolve. Through a program of community engagement, improving access to translators (where funds permit) and language/culturally sensitive material, as well as strategic changes in research requests and service design to ensure adequate representation of minority groups, are all possible means of addressing these inequalities.