BC Platforms Partners with Genomenon to Boost Rare Disease Diagnostics and Research
Real World Data (RWD) captures the realities in patient care: comorbidities, disease complexity and patient treatment pathways with outcomes in a real-world setting. Alongside the gold standard of clinical trial data, RWD is increasingly used as a source of assurance for drugs to be accepted by Regulatory Authorities and adopted into medical practice.
Biobanks offer a unique source of Real World Data and Real World Evidence, highly valuable for Pharmaceutical companies. Realizing collaboration, however, poses challenges as biobanks rarely have the connections, resources, and experience to work with industry to securely share their data in RWD studies.
Additionally, they experience difficulties operating with industry demands, meeting tight timelines and accurately describing the breadth and depth of available data, and patient cohorts. These roadblocks make it challenging to communicate the value of the biobank and their resources to industry.
Leveraging the power of RWD through connections in a global network
To address challenges, bridge the gap and increase industry / biobank collaborations, BC Platforms invites biobanks to join our Global Data Partner Network, which enables relationships and effective research collaborations. BC Platforms operates as a trusted industry collaborator, facilitator and integrator compiling global data sets securely for rapid industry research.
For our biobank partners, BC Platforms provides software architecture that keeps them in control of their data collections according to their local access policies, while enabling biobank approved industry funded research and novel data generation.
Case Study: Scope Refinement Study in a Global Data Network
Three European biobanks from Germany, Finland and Estonia collaborated with a large global biopharmaceutical company and provided a deep dive into the availability of data across the disease areas of solid tumour and GI-autoimmunity.
The biobanks had recently joined the BC Platforms’ Global Data Partner Network and shared the strength of their collections. BC Platforms worked to connect the biobank collections with industry researchers who have identified their RWD needs, and research aims. Before the pharmaceutical company proceeded with the full RWD project, they needed to verify the depth and breadth of the data available.
A Scope Refinement Study was initiated with the selected biobanks, specifically focused on allowing a deep dive into the available data for a pre-defined cohort of biobank participants. To complete the Scope Refinement, the biobanks examined and described their data in an aggregated manner according to a data workbook template provided by BC Platforms.
The objective of the Scope Refinement was to gain an overview of the clinical and molecular data available in these disease areas, understanding data granularity (attributes, depth, availability), overall coverage (size and spread, classification, quantification, incidence), and longitudinal coverage (volume, continuity, and period of availability).
The structure of the Scope Refinement study allowed the biobanks to follow their local approval process and be compensated for their time in completing the workbook. Furthermore, the pharmaceutical company gained deep knowledge on the patient cohorts of interest and the ability to have statistical significance for their research questions.
BC Platforms provided advisory services, project management, and support to the biobanks for successful and timely completion of the Scope Refinement. Within a month, the Scope Refinement Study was completed, describing the biobanks’ data in over 1000 consented, clinically relevant subjects.
The biobanks benefitted in gaining an understanding of drug developers´ needs for RWD and the expectations for industry collaborations. Through these Scope Refinement projects, biobanks can support accelerated collaborations with industry and highlight the strength of their collections. This brings biobanks one step closer to enabling personalized medicine and benefiting future patients. Biobanks are a central piece of the RWD ecosystem, unlocking the power of data and samples through more efficient use of existing information and resources.
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